The Frustration with Dyspraxia

For weeks I've been noticing Zachary struggling much more with his dyspraxia.

For those of you new to reading my blog you can find more information on these websites regarding dyspraxia:

http://en.wikipedia.org/wiki/Dyspraxia

http://www.dyspraxiausa.org/index.php/The-Facts-on-Dyspraxia.html

http://www.dyspraxiafoundation.org.uk/services/dys_dyspraxia.php

By definition:

Developmental Dyspraxia (also known as Developmental Co-ordination Disorder, and the Clumsy Child Syndrome) is a neurologically based disorder of the processes involved in praxis or the planning of movement to achieve a predetermined idea or purpose, which may affect the acquisition of new skills and the execution of those already learned. More specifically, it is a disorder of praxis, or the process of ideation (forming an idea of using a known movement to achieve a planned purpose), motor planning (planning the action needed to achieve the idea), and execution (carrying out the planned movement).

I was able to talk with his OT about what has been taking place at home and she was able to experience just what I was telling her (I was happy about this because a lot of times I'll report behavior/symptoms at home and she won't get to see them for herself) basically right now Zach is regressing. His dyspraxia is rather sever (and has been) but we were seeing improvements. There is no cure for dyspraxia and it tends to be a life long struggle for those affected by it.

Today Ms Jerry started his re-evaluation of his fine motor skills using PDMS-2. I was asked to leave the room because I had to have Zoe with me and she was very distracting to Zachary. We waited and when all was said and done Ms. Jerry came out and let us know although not scored yet - he did worse then she thought he would do. It was very apparent that his friend "dyspraxia" reared his ugly face today! She also talked to me about the hopes this will prove to the schools he must have an OT in the school setting.

It is very frustrating because one month, one week, one day, one hour, one minute Zach can do something and the next month, next week, next day, next hour, next minute he can not do the same task. It affects his everyday life to the point of frustration - not just for Zach but for mommy too - really for everyone in his life.

Sometimes I just sit and wish life was different...that my son didn't have to face the struggles that he does............but if life were different we'd all be different and I don't want to change one thing!

Zach will make it over all the hurdles, all the struggles that are given to him......he is strong!

2009 Dance is Over

Zoe's (3-4) 1st year of dance 2006-2007 (tap, ballet)

Zoe's (4-5) 2nd year of dance 2007-2008 (tap, ballet, jazz)

Zoe and Zach July 27, 2009

Zoe's (5-6) 3rd year of dance 2008-2009 (tap, ballet, jazz)

Another year of dance comes to an end!

This was Zoe's 3rd year of dance and as sad as she is it has come to it's end, next year will be here faster then she knows!

Job well done Zoe!

Mommy, Daddy, and Zachary are so very proud of our tiny dancer!

Tiny Dancer

I wanted to share just a couple of Zoe's dance proofs from the 2009 dance season

Tap
Ballet
Jazz

The Dentist

This morning was the kids 6 month check up and cleaning at the dentist.

I love our dentist's office.....they are a pediatric office and it is such a fun experience every time we've gone!

Zoe was a big girl and went for her cleaning and talk with the dentist all by herself. Her check up went smoothly and the best news NO cavities - she hasn't had one yet (but then again I'm 32 and have never had one either). Zoe has lost 3 teeth in 6 months and has 3 more that are just about ready to fall out. The dentist gave her some friendly advise for getting them out....now to see if she does what he said.

Zachary was such a little man today. He followed Amy into the room, climbed up on the chair and did everything she told him to. He put headphones on and watched a movie while she cleaned his teeth....OH can't forget he wore sunglasses because the light was so bright. As soon as Amy turned on the light to clean his teeth he opened his mouth -- it was really funny. Zach has an extra tooth (we've known this for a long time now) but because of the extra tooth they decided now was the time to run x-rays to see what his permanent teeth will look like. He was brave and sat just how he was told, he didn't move a muscle! When the dentist came in to look at them he saw that on the same side where the extra tooth is he was missing a permanent tooth. They then took another x-ray at a higher angle and found it BUT it is much further up in his mouth then the others. I don't know what this means and to be honest I didn't ask - I was just happy they found one. Before they found it, the dentist was telling me all of what would have to be done to Zach if he didn't see it - it was a lot, so to know it was there made me happy not to have another worry on my plate.

The check up went so well for both kids.....it was a good visit and we don't get many of those ;-)

A Little Piece of Art

Zoe, Zachary, & Mommy Go To the Pool

Today at OT was a fun day. Zach did most of his work when it was time to get ready for PT...which was the most fun ever because we spent the hour of PT that is normally spent cooped up indoors at the pool.

Zach's OT (Ms. Jerry) had written out as part of his plan working on coloring and drawing skills as one of the many things to work on today. So, after Zach took his clothes off and put on his bathing suit in anticipation of swimming (and also working on his dressing skills) she thought she would have him make a picture of Zoe, Zachary, & Mommy at the pool.

In all fairness this was not just done by him.....

Ms. Jerry was a big part in getting this picture made. The sun, the outline of the pool, the red face, the fish, the circle of the lone face (that is me -- Mommy), and the green lines in the pool - all done by her.

BUT

Zach also took a major role in this masterpiece!

It was him who colored the sun in (and out), it was him who put the water in and out of the pool, it was him who attempted to make faces on Mommy and Zoe. Although Ms. Jerry had to (at points) hold his hand to help him move it, like while making the smile on Mommy's face, or while making the first couple of lines of water.

Even though Zach is behind on his skills and as hard as that is to watch....he will never fail to put a smile on his Mommy's face!!

I Love You Zachary, thanks for the great masterpiece!

Getting Threw This Week

Yesterday was Monday...the day of the week we have nothing going on, we had no appointments, the pool is closed, it was too hot for the beach, no play dates. Monday Zoe spent most of the day on the couch and at the end of the day started crying for her daddy because she just didn't feel well.

Tuesday is today...Zach has swimming, OT, and PT. The rest of the day is nothing and Zoe is already asking to take it easy.

Wednesday....Zach has therapy, then we have a birthday party, and 3 hours of dance.

Thursday...More swimming, more therapy.

Friday...2 dentist appointments, and 6 hours of dance

Saturday...nighttime recital

Sunday...daytime recital

With how Zoe's energy is, I'm not sure I see any of this week going very well.

Still No Real Answer but We Are "HOPEFUL"

We had a long morning waiting for the doctor. 2 hours later we were done after about 45 minutes with her discussing all of Zoe's blood tests.

She is "hopeful" this is a virus but is concerned there is something else along with it. She was concerned that it has been so long with a low WBC. She did say the possibility exists that this is not just one thing but a combo - yet "hopeful" it is only a virus.

For right now we wait another 2 weeks to run another blood test with a blood smear. The week after we go back to see her and talk about what was found.

If Zoe continues to have the headaches she will order a scan on her head to "worst case scenario make sure she doesn't have a brain tumor" I am to monitor the headaches closely along with monitoring her activity level.

She told me that if Zoe's WBC is still low or lower we will talk about doing a bone marrow biopsy when we see her on July 10th. Of course this was followed by why we would do the biopsy and that was because of the possibilities of this still being leukemia (she called it Acute Leukemia http://kidshealth.org/parent/medical/cancer/cancer_leukemia.html ) but said "if it is, we are lucky because we will be catching at the very beginning stages" The biopsy would be a definite answer.

The doctor found no reason at this point to stop Zoe from doing the things she always does....she told me to just make sure I listen to her and if something is becoming too much she is to rest.

We were sent home and told to obtain all prior CBC that have been ran on Zoe over the past 6 years so that she can see where Zoe's baseline WBC is.

I walked out not feeling fearful like I thought I would, but feeling in the term the Doctor used "HOPEFUL" - Hopeful that on July 10th, in 3 weeks from today we will have more answers even if that answer is moving on to the next step and running a biopsy. I feel like we are moving forward and on the right path to help Zoe.............YES I AM HOPEFUL!

Getting Ready for Tomorrow

I had really been trying to put tomorrow out of my mind, when yesterday my husband asked how I was feeling, if I was ready for the big appointment. My reply to him was I'll be ready when we have good news from the last blood test.

Yesterday was the last blood test....for some reason I had it set in my mind all would be good, Zoe's counts would be up.

This morning I got the call...the test was in.....the news was not good. Not only was her WBC low it was lower then it was last week. Here Monocytes% is high, and her Neutrophils-Absolute are low. It has been interesting to watch how the different tests vary and at different times something else is off verses other tests.

I asked questions but they couldn't be answered by simple answers.....just a "the hematologist is where she needs to be right now -- they know all there is to know and will help her"

I was told to be prepared it is a possibility they will want to do a bone marrow biopsy. I'm hoping they won't want to do it tomorrow and let me have some time to prepare her for it if it needs to be done.

So for now......no answers just the same old low WBC along with other tests being off too.

I'm hoping tomorrow brings news...and good news at that!

The Start of Summer

Summer was off to an early start for us, but it has hit me that the next 71 days it will be me and my two kids add to that the early start to summer and it becomes 80 and 1/2 days spent together. I forgot what it was like the 3 of us day in and day out.

Now with Zach being older, Zoe being older they both have a mind of their own and want to go in two totally different directions.

Mine and Zach's days won't change much, he will still have to go to all his therapies but now I have to worry of dragging Zoe along with us. She likes to go and is always saying she'd like to be a therapist when she grows up, but still I know it is a lot on a 6 year old to do all week long.

Zoe's days are going to be 100% different then a typical school day. I'm hoping I will come up with ideas to keep her happy and feeling like it isn't all about Zach.

This week is her hematology/oncology appointment...I'm hoping we will have some solid answers on Friday, but trying not to get my hopes up at the same time.

Next week will be busy, not only do we have therapy, and swimming lessons, but added to the typical week we have recital week for Zoe - which means dance on Wednesday from 5pm - 9pm, Friday from 3pm - 9pm, and two recital shows on Saturday and Sunday. We also have a dentist appointment for both kids that week.

The rest of the summer is looking kind of clear, for now......

A Little Bit of Relief

This morning Zoe woke up with a bit of energy. She was playing and talking just like she normally would. I'm taking this a a good sign, as I need some good signs and something to believe in right now.

No So Good News

Bad News....Zoe's WBC counts are dropping again.......we have no clue what is going on, sounds like hematology/oncology is hopefully going to hold all the answers for us.

Summer Break

It seams Summer break has started early in our home.

Yesterday Zoe did not want to go to school.....very out of character for a little girl who loves learning and being with her friends! It was the first time she has ever asked NOT to go to school. If there is one thing you should know about Zoe is that she does not like to skip a beat....missing anything is not an option in her daily life. As the hospital told me, "go on her cues if she does not want to be in school by all means keep her out". SO I kept her home.

She was not herself most of the day. Her energy faded in and out.

I spoke with her pediatrician and her rheumatologist office. They both ended up wanting her to go have more blood drawn. Our trip out of the house for the day was to the lab, where they took six more vials of blood from her little arm that looks more like a pin cushion right now.

Both doctors don't want her expending more energy then she has to.

The rheumatologist office basically ruled out systemic JRA over the phone which was a big comfort to me. Her WBC would be high not low.

I am happy things are getting ruled out, but I will be in better spirits when we know just what is going on. As for now we wait until the next round of tests are in and for next week when she sees hematology/oncology.

Strength and Struggles

Lately I've been really into finding quotes that fit in my world right now...this one seemed more then perfect for me to add to the blog....

Strength does not come from winning. Your struggles develop your strengths. When you go through hardships and decide not to surrender, that is strength.

~Arnold Schwarzenegger

I woke up this morning feeling stronger then I've felt in a while. I woke up felling I can take on these struggles that some days I have such a hard time coming to terms with. I am not surrendering!

I am no longer on autopilot I am in fight mode. I'm liking this feeling and hoping it stays around for a while.

"The Special Mother"

I have read this a hundred times and each time I cry. A good friend of mine happened across it today and shared it with me, I in turn thought I'd share it on my blog. Thank You Toni.....you are so very sweet and thoughtful - I am very thankful to have you in my life!

"The Special Mother" by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children.

Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger...

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it." "I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you."

God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness."

The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect.

She doesn't realize it yet, but she is to be envied.

She will never take for granted a 'spoken word'".

She will not consider a "step" ordinary.

When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them.

She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."

Zoe: Hospital Stay.....Hospital Release

Just a little catch up as things have been busy.......

Friday I received a call from Zoe's teacher saying that Zoe had a rash and was not acting herself (she said Zoe had been very slow since Monday in school) but that Zoe claimed to be fine when asked. I explained more about what they were looking into Zoe having. We got off the phone and the teacher sat to talk with Zoe explaining that she just got off the phone with mommy and it was okay to be honest about how she is feeling. Zoe told her she was tired and not feeling herself. My phone rang shortly after that so I ran to school and picked her up.

On my way to the school I called the pediatricians office and was told to come straight in. When we got there Zoe was very lethargic so the doctor made some calls one was to a local rheumatologist (our is out of the country right now) he wanted her admitted - but neither have admitting rights at our Children's Hospital. The next call she made was to the ER and she spoke with the Dr who was there at the time. It wasn't long before we were seen and the doctor there agrees to admit her. They drew 7 vials of blood while we were in the ER. After a couple hours Zoe's room was ready.

Zoe wanted Daddy to stay so he was AMAZING and stayed they had a mini camp out in the hospital.

Zoe was released 24 hours later. They did not find a virus. She does NOT have leukemia (we are all so thankful). They think this is either lupus or systemic JRA.....but we are waiting for more tests to be back. Her WBC count is going up BUT is still not normal.

This week I am to take her to her pediatrician tomorrow. Take her for another blood draw. Take her to either the rheumatologist that saw her in the hospital our ours. Because her WBC count has been low for 2 months that is a BIG concern we are to still go and see hematology/oncology as planed for next week.

As far as everything goes we have ruled out a lot but have not gotten to the root of what is happening.

How About Some Happy News: Zachary

As everyone who follow this blog knows my son was a sever verbal dyspraxic child (he is now considered mild). When he was an infant he never babbled like the typical child would. At 19 months he had his first speech session he was seen 3 days (3 hours) a week since then by his SLP, 2 days a week (2 hours) by his OT, 1 day a week (1 hour) by his PT - that is over a year of lots of therapy!

Yesterday she found her notes from Zach's very first session and gave them to me to put in his giant medical folder.

At 19 months Zach receptively was like a 9-12 month old child expressively 6-9 months old.

I'm not too sure where he is at now at 32 months BUT I know he has improved greatly!

At 19 months he could not ID pictures in a book.....at 32 months he finally can not with 100% accuracy BUT he can do it!

At 19 months he could only ID his nose....at 32 months he can ID most of his body parts.

At 19 months he could not ID any clothing.....at 32 months he now knows everything I put on him.

At 19 months he had no words....at 32 months he now enjoys telling other people "Stop Talking!" and has plenty of words.

At 19 months he could not talk....at 32 month he can talk....he still struggles, more then I'd like to see BUT he has made such amazing strides!

My son is still dyspraxic (verbal, oral, and motor).....that is something I'm not too sure he will ever fully overcome....I have hopes and I am optimistic about it though, he's come this far.

With all that is going on between health issues of both of my children it is nice to reflect on the positives that have come from a lot of hard work, sweat, tears, and most importantly determination to overcome the struggles we've been dealt!

I never thought I'd be so happy for my child to say to me "Mommy STOP talking" ;-)

Appointment Date

I spoke with our pediatrician's office today and found out that Zoe has been given an appointment by the hematology/oncology department due to her blood work being abnormal. We will see them on June 19th. It may be sooner once the other tests are back but for now that is the date.

I'm really worried....out of all the specialists we see at the children's clinic hematology/oncology (they are the same group) was the area I hoped we'd never have to have an appointment with BUT I'm feeling confident we will be in good hands there.

The Latest Information on Zoe

Not all tests were back when we saw the doctor at 2:30pm, it may be Friday or later before some of them are back. Zoe must go back to the lab in another 10 days depending on the rest of the test results.

Okay so for the good news....her WBC and neutrophils are creeping up, but no where near normal right now. We are still to be on the lookout for a fever and if she ends up having one it is straight to the hospital.

Best case scenario she was saying that this would be a cyclic neutropenia -- but once she saw the C4 so low it sounded as if that wasn't the case. http://neutropenianet.org/what-it-is/different-types-neutropenia/ or http://neutropenianet.org/what-it-is/


The bad news is that the C4 was very low.......the doctor told me this could have to do with 3 things, JRA (please let it be this, as we've delt woth JRA for years), lupus, or leukemia.

She brought up leukemia 4 different times - this is what is so very scary to me.

We are still waiting on the smear which is the most important test right now because it will show if her cells are normal or abnormal which can lead us to if this is leukemia or cancer.

I'm to make an appointment with her rheumatologist ASAP -- only problem is she is out of the country for 2 weeks. I did call when we got home and spoke with her nurse....who told me the C4 won't lean them towards lupus or JRA but more towards leukemia. She wanted to wait for the results of the other blood tests. After those are back there are more she will add.

Our pediatrician is talking with the infectious disease doctor who is leaning towards this being lupus or leukemia based on the tests and right now he doesn't need to see her because she has had NO fever....therefore NO infection.

She has also been in contact with hematology who wants to see the rest of the tests. She was calling as I left with the latest information.


I'm feeling better that her levels are rising BUT still very very worried about what is going on.

Quick Update on Zoe

Her test and appointment went well. Truthfully the potty issues are going to have to take a back seat until we can figure out what is going on with her blood.

I am waiting on yet another call from the pediatrician (I've spoken with her twice today) on getting Zoe seen by hematology and infectious disease. She also now needs to have her blood drawn tomorrow because her WBC dropped so rapidly.

The doctor said what she has right now is sever neutropenia. She said this may just be the beginning and it may not be something simple that is why the rush to get her seen ASAP.

If Zoe gets a fever no matter how low she will be admitted to our Children's Hospital for observation and tests.

I'll update when I can.