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Tuesday, November 30, 2010

Day 2 at the KCC

I am still very anxious~I always am, but Nancy reminded me today that my anxiousness (if continued) will cause Luke stress. Immediately I was brought back to the scripture that I had read this morning. Someone shared it with me this week and it has such a message...

The Lord is my shepherd; I shall not want.

He maketh me to lie down in green pastures; he leadeth me beside the still waters.

He restoreth my soul; he leadeth me in the paths of righteousness for his name's sake.

Although this journey is not the one I would have planned for us (meaning it is not what I would have wanted for Luke if I had the power to map out his life)...I know that the Lord will provide and take care of us.

Honestly, he already has.

All I need to do is to show this strength, not just in my words, but in my expressions and actions...so that Luke will know that we can do this. He needs to know that we have faith that he can overcome apraxia of speech and sensory processing disorder.

Luke had 2 fabulous sessions with Nancy and a long OT session specializing in sensory processing disorder with Jason, as well as our consults with both of them. I am still learning and have a long way to go, but Brad is really getting the hang of all of this. Primarily I have been the one researching and learning and he has just gone along with the flow, but now he is taking a bigger role in asking probing questions.

Sorry I can't get the pics uploaded~something is wrong with this blog now and I hope to figure it out soon~so I can post the pics. The vest was used in speech today to try to get him to sit up straight and produce a better sound with good posture.

We are hearing LOTS more parts of words and sounds that we have never heard Luke produce before. One that really stands out is the "t" sound. He is also saying words that I have never heard him produce before. They are still working on word phrases and sentences, like "all done", "my turn", "up high", "put these away" and "I throw the ball".

We worked with OT in a pool of rice and beans, ball pit, various swings and in a very long consult. They are testing his skin tonight to see if it will "take" taping to rotate his hips. If it works, they will tape him tomorrow and we will see how that works. We are also going to look into purchasing a suit that would do the same thing, instead of having to tape him.

They are going to work with our people at home and help them understand Luke's needs in therapy. They promised us that although we won't be coming to therapy at the KCC on a regular basis, they will still consult and be there for us, should we need them.

We spent the rest of the afternoon having fun and exploring Detroit. We even saw Canada today :) and enjoyed Detroit's version of a nature zoo.

We are just as excited about what tomorrow will bring, minus the pressure~because right now...we can rest and renew...we are here and we are getting the best possible help we could for Luke.

Monday, November 29, 2010

The Big Day Part 2

I would love to say that I could blog exactly what happened today and what we found out, but honestly it was so much to take in...I cannot. What I can tell you is exactly what I got from the Occupational Therapy evaluation and what it means for Luke.

Luke definitely has sensory motor issues, especially oral. I knew this, as I have been telling everyone that I could that I thought there was something wrong that he put everything in his mouth~but you know...I am just his mother~lol!!!

OK~so back to the evaluation.

Jessica Hunt is an OT and the director of Occupational Therapy and Sensory Motor Issues at the Kaufman Children's Center. She evaluated and conferenced with us for over 2 hours this afternoon. She will send this report to us in a few weeks and share any information with Luke's OT. When we leave, we will have a definite plan of action for Luke's success. :)

To put it in a nutshell~Luke has sensory motor issues that are possibly contributing to his problems with speech (jaw instability, etc), eating/drinking problems, low muscle tone, hypotonia that causes his hips way too much movement, they turn in and this causes his feet (flat) to also turn in. (They plan to either tape him or fit him for a suit that will turn his hips and keep his feet straight) There is much, much more~but I honestly can't remember it all. I am about to do some self imposed homework (2 sensory motor books about 2 or 3 inches thick, each) and hopefully will gain more knowledge that I can impart later.

But the biggest part of all of this~is that it can all be "fixed" and that because we are so aggressive and early with these interventions~he will be fine.

We have lots of work ahead of us and the road will not always be easy, but we know that we can do this thing. God has paved the way...all we have to do is follow His lead.

Thanks again for all the well wishes, prayers and support~they mean so much! We are truly overwhelmed by the kind words and encouragement.

And to leave you with some more hope and smiles~Luke worked on lots of words today, even saying sentences~so, I am positive that he will be saying some of them on his own, soon!!!

PS We signed up to come back to the Kaufman Children's Center for Spring Break. We knew that this wouldn't be our only trip to Michigan and feel so strongly about what we are learning here that we made an appointment to come back for a tune up in the spring.

The Big Day Part 1

It is the big day. The one I had hoped and waited for...and now after the first evaluation and consultation~Luke sleeps, Brad is on a hunt for food and I am blogging...trying to get these feelings and emotions sorted out.

We arrived at the KCC on time~WOOP WOOP! Nothing short of a miracle for us to be there on time :) We even had a minute to spare. I met with Nancy Kaufman prior to her evaluating and working with Luke, while Brad watched him in the very kid friendly waiting area. It is amazing how many children are here with special needs~and how well arranged this children's center is.

Nancy had all of our paperwork, but wanted to familarize herself with Luke's history, his likes and dislikes, etc. We quickly ushered Luke in and Brad and I went into a well thought out observation room (behind the glass) and watched therapy with Nancy. I will say...it looks alot different than anything we have had. Very fast paced, very child centered, but planned methodically~a video camera taped the entire session and I took notes the entire time. Jotting down all that I could. Luke did very well~he listened and was attentive~very attentive for a 2 year old!

Nancy conferenced with us after the evaluation and session. She commended us on getting him so much therapy and so early on. She reaffirmed that he was apraxic-he did have apraxia of speech-Childhood Apraxia of Speech.
She also talked to us about the kind of therapy needed. Her method is by far the best and we must get our therapist to pattern their methods off of hers for this to work. Thankfully, our people are on board~it's just the training that we need now. (We hope to leave with the instructional dvd set that should help our slps provide the Kaufman Speech to Language Protocol aka K-SLP methods)

Nancy also stressed the importance of OT for sensory issues. We are going to go through a 2 hour evaluation this afternoon to address these issues. Before now oral sensory issues were suggested and we said that we knew he had some issues, but they haven't been addressed.

I cannot wait to hear what Jessica (clinic director for OT at the KCC) has to say this afternoon.

Sunday, November 28, 2010


It feels like it is Christmas Eve and I am a young child awaiting Santa's arrival.  I am so anxious about what our trip to Michigan will reveal that we don't already know and what it will bring for Luke. 

It is my prayer that we will leave the KCC with more answers, more pieces to the puzzle and more words.

God has brought us to this journey.

It was through Him that I found Nancy Kaufman.  It was through Him that I attended the conference in Jacksonville where she spoke.  It was through Him that this entire trip was basically paid for.

Roundtrip Flight to Michigan for 3 (donated by angels)
Hotel for 5 days (funded by Walton Options)
Therapy at the KCC (funded by Christian Fund for the Disabled)
Unlocking Luke's Voice = PRICELESS

God is Good All The Time~!!!

As I opened up the bible in our hotel, I was lead to this

I will praise thee, O Lord, with my whole heart; I will shew forth thy marvellous works. I will be glad and rejoice in thee, I will sing praise to thy name, O thou most High.

Tomorrow is a new day and I cannot wait to see what it brings for us.  :)

Thursday, November 25, 2010

What Brought Us to Kaufman?

I have been asked by LOTS of people...how did you find out Luke had apraxia of speech? 

How did you know? 

How did you find Nancy Kaufman and the Kaufman Children's Center?

And the story goes something like this...when it was first suggested that Luke could possibly have apraxia of speech...I started researching. 

Honestly, he was only 18 months at the time and I still was giving him the benefit of the doubt.  He was a boy and he had been a little later in all of the developmental milestones.  I went back and forth with it over the summer~wrestling with the notion, the idea and the what ifs.  I also asked others, sought help and advice, and researched the best practices. 

Then, when I couldn't find anyone to diagnose him by the end of summer, had added additional speech and still wasn't seeing the progress that I thought he should be having~I kept going.  I kept going when doors were shut.  When people tried to stop us.  When others suggested that this was the best they could do and that we should wait. 

I kept going until this search brought me to Nancy Kaufman. 

By October, I had attended her conference on apraxia in Jacksonville, Florida.  I stalked her at the conference. (Yep, you read that right~stalker needs to be added to my profile)  I sat front and center, asked her questions at every break, showed her a video clip of Luke, even braved asking her for her autograph (I really wanted a picture, but was too embarrassed to ask) and took her up on the offer for parents of apraxic children to eat lunch with her. 

At lunch, I tried to listen more than talk~and believe me...it was hard.  I let others tell their stories and tried not to tell them too much, although some of them were just beginning this journey and had so much to learn.  It was so difficult not to share everything I knew about apraxia with them~I had to quiet myself and just wait. 

At one point during lunch, I heard Nancy say that her contribution to speech and language pathology was her clinical work~she was first and foremost a clinician~she lectured and spoke to help others so that they would use her techniques and kits correctly (to benefit their clients). 

When she said that~I knew she was the "real deal".  And I said, so you don't just preach from an ivory tower~it was at the moment that she looked at me and I think...got me.  I already got her~got her philosophy~got her mission...and I wanted Luke to experience it.

I sat through the rest of the conference watching video after video of kids that came to Nancy Kaufman being non verbal and left with the gift of language. 

I saw a little boy that came to her, much like Luke, saying very few words....and then I saw him at 18 years of age speaking clearly~extremely articulate~you could not tell that there had ever been a speech problem.  He spoke of his appreciation for Mrs. Kaufman and his parents getting him this help so early.  Then, he told of his plans for college. 

She really was a miracle worker.  She didn't really mind what the disability was~down's syndrome, autism, or CP~she taught them to speak.  

These videos were life changing.  They brought tears to my eyes.  I already knew that her methods would be best for Luke~that's why I had attended the conference.  But after seeing video after video of successful interventions....I just knew that I had to bring Luke to her. 

He had to go to her center for therapy and I would stop at nothing to get him there.  I am that kind of person.  I don't take no for an answer.  I guess I can thank my parents for instilling this in me.  They have always told me that I can do anything.  They did everything in their power to make me believe it.  And for this...I thank them.

I spoke to Nancy at the next break and inquired about the 4 day treatments that she does with patients.  She told me that majority of them were out of state visits, some even from out of the country.  I asked about the cost and about the therapies, etc.  I got all the details that I could.

Then I sat back down, trying to figure out how we would get there. 

My husband had already told me that we weren't the "Newmans" from the Young and the Restless.  We couldn't fly in specialists and fly all over the world trying to find an answer for Luke's lack of speech. 

But still, I couldn't stop thinking that this must be done.  I knew that even though I had learned TONS, I hadn't learned enough to get Luke to speak.  I couldn't do it myself~and this was a big task~something that I would have to have assistance with. 

I texted my husband to pick me up 15 minutes before the conference ended, knowing this would give me a few minutes to get Luke from him, bring him in and hopefully "run into" Nancy Kaufman at the end.  I didn't really tell Brad my plan, but he knows me...he knew I was up to something. 

I waited for the SLPs to clear out and brought Luke into the conference center.  I let him run into the ballroom~and intuitively he ran right up to Nancy.  She stopped everything and looked at him.  She spoke to him...saying Hi Luke!  And he waved to her ;) 

(Yes, it was hard for me to hold it together~but I did.) 

I held it together long enough to hear her say...Yes, he has apraxia~Yes, there was a cancellation~Yes, she wanted us to come to Michigan.  YES, YES, YES!!!

And that my friends is the story...

We leave Sunday to visit the Kaufman Children's Center and to start the 4 day treatment program with Nancy Kaufman.  We are beyond excited about this opportunity for Luke.  We are "over the moon" about the possibilities that this treatment will bring.  We cannot wait to hear the words that are unlocked. 

Wednesday, November 24, 2010

Too Good To Be True?

Can it be too good to be true?  I am certainly thinking so. 

Somebody is either going to wake me up soon or someone's up to something.

I know I should have a better outlook, but seriously~why would the early intervention people have been so nice on Monday?  It's not like they just came to their senses and said, "Hey, let's quit giving this mom grief and give her the help she needs for her child."  Or is it?

So, here is a run down of Monday~we went to speech at VSU with Miss Jamie and Luke did pretty well.  Maggie, Brad and I got to watch behind the glass and giggle at our little man.  He is so funny, comical at times~especially when playing the harmonica and pretending like a lion puppet is playing the harmonica.  I wish we would have video taped it.  Too cute! 

We completed a survey/test (REEP, I think?!?) today at the university clinic that basically told us what we already know, but reaffirmed that Luke is very high in his receptive language and still weak in expressive language.  As we were leaving though, he suprised us all by yelling out "Jamie" (clear as day)...so clear that I didn't believe he had said it!

Second therapy was with our private SLP at our home.  Mrs. Casey usually comes to my parent's home during the week, so this was a treat for us and for her. 

She was totally impressed by the amount of materials that we have (all over the place) in our home.  I was totally impressed that we had actually cleaned up the living room, sun room, dining room, kitchen and Luke's bedroom. 

We no longer looked like we could be on Hoarders: Buried Alive!  (LOL)  :)  I really should have taken pictures, because if you know me...this cannot last~!!!

Luke said a couple of words already in his vocabulary and he also said help~YAY LUKE!!!  When he said it, we both said yes, help and then looked at each other and started cheering. 

I have a friend who just shared with me that at the STAR center (the team) told her that anyone who works with your child should absolutely, positively want to eat your kid up with a spoon :)  (totally paraphrasing~but you get the idea)  They should think that your kid is the cutest, most precious thing on this earth~and if you have that...you have the right people working on your team.

We are so blessed to have those "eat him up with a spoon" kind of therapists on TEAM LUKE! 

So, back to the EI service coordinator and early intervention specialist visit...it went well, and that is why I think this was too good to be true.

I failed to mention that this meeting took 2 whole hours~during which someone called with questions about a grant that I had applied for.  My dear husband thought he was doing us a big favor by handling it...or at least he thought he did...he told them to call me back.

He didn't find out who they were or get a call back number, but he was so proud that he knew it was for a grant~and he knew that it was a good sign that they were contacting us.  (Bless his heart) 

EEG Take 2

Today is the day of the EEG with sedation.  I have been asked why we are doing so many tests...well, I guess it is to get answers.  I guess it is to be better prepared.  I guess it is to help Luke.  I guess it is to have insurance become responsible. 

I say all these things not really as guesses, but as reasons. 

I question why people who have children with apraxia don't run the gammets of tests.  I wonder if they are afraid of the findings or if they just don't want to know what is really wrong.  I question that if more people did the testing and shared their answers~would we find the missing link?

We attemped an EEG in our neurologist's office and it was insufficient~not enough time for a good enough "read"~so a sedated EEG at the hospital was ordered.  I wish that we could do the EEG and the MRI at the same time, but because we are dealing with insurance and hospitals~it can't be done. 

So, my child and I will suffer through 2 tests, 2 sedations and 2 hospital visits because of their incompetency.  I did try to advocate for a better treatment plan, but supposedly there were no more appointments for MRIs at SGMC until the new year. 

Again, if I rescheduled, it would be on the next year's insurance and I would start the new year off almost meeting my deductible~and we would put off the results.  Not to mention, the medical bills are piling up!

Please say a prayer that Luke handles the sedation well and comes out of this procedure like the happy, healthy boy that we think he is~the character that we know and love.

So, off we go to SGMC~!

Tuesday, November 23, 2010

Inspiration for Thanksgiving 2

Here are a few more of the notes that I have received since sharing about Luke's Apraxia.  Giving thanks for all of these blessings~

Note #6~

Thank you so much. You are truly a blessing and such a wonderful friend. I'll send ya an e-mail within the next day or 2 when I get through his paperwork and see. Thank you again. I thank God every day for my kids and for friends like you. I will always keep Luke in my prayers for his road and journey ahead.

Note #7~

Hi stranger!

I read your blog and cried. You are so strong and brave. God be with you and your family and your precious son. He is lucky to have you for a mother. Wishing you all a happy holiday season.

Take care!

Note #8~

Thank you for posting the Luke Tarpley Fund info. Great to know, I can't imagine how much that costs.

Lots of love from up the road

P.S. Do y'all age or have like a Highlander thing going on. Y'all look great.

Note #9~

Guess What?

I just received approval today for ____'s therapy at KCC to be covered as an "in network" charge. First I got the therapy approved and pre certified as an outpatient clinic for specialty therapy. Then, I argued the fact that there is no specialist or anyone even certified in my network to treat children with Apraxia. They checked and agreed. Since all deductibles and out of pockets have already been met, it will be covered at 100%.

Talk about fighting for miracles. I have to admit, I am brought to tears when my hard work and efforts pay off. Just wanted to share.

Note #10~

Hey Mary Clare!

I miss you!! I think about you and your sweet family often...Well said in your blog about Luke! You are his best advocate!!
Much love to you all...

Note #11~

I was just reading your blog about sweet Luke!

I am actually speechless (no comments necessary) about what to say. I truly do hope you can find the answers you so desperately need. If I can ever help you in any way with contacts, dr appts, insurance questions or anything please let me know. I would be more than happy to help you in any way. Please let me know.

In the meantime, we will say special prayers for all of you!

Note #12~

Girl, he is SOO adorable! I pray one day soon he is talking our heads off.

I BELIEVE it WILL happen! Soon ~


Note #13~

You let me know if there's anything at all I can do to help. I have lots of time on my hands now and I would love to help. You are one of my biggest heroes :~)

Thanks for giving encouragement in the form of words, it means so much~MC

Success Stories for Complex Communication Disorders


Early Intervention ~Wrightslaw


House of Krause

House of Krause is where I have gotten ALOT of information about Apraxia. 

I first saw her son on youtube when I was searching for videos of children with Apraxia of Speech.  Many of the videos I found looked nothing like my Luke~until I came to her Luke~and I saw it.  This is what my baby had, too. 

I watched his first ST session and lots more of them, knowing that what they were doing in therapy for her Luke was what I wanted for my Luke.  :)

Here's a link to the House of Krause blog~


Thanks Jen Krause for putting your story out there to help others~because of this I found answers to my questions~because of this I knew~because of this I can help my son and for that...I am eternally grateful.

KCC~Kaufman Children's Center


Monday, November 22, 2010

Getting My "Game" Face On~

Today is the day.  I have to meet with the early intervention agency people (again).  This time for them to assist me in filling out some forms. 

Yeah, you read that correctly~they will be assisting me~LOL! 

The ONLY reason that I am meeting with them is because I have to have someone from a government agency sign off on some paperwork for Luke.  It was either them or DFCS and I really did try to get a social worker vs. a service coordinator ;)  No such luck.  Oh well, they will be way more uncomfortable than I will.
I say this because this same agency just cut our occupational therapy because it wasn't happening in our home.  I know you are thinking...why didn't she blog about this~this is serious.  Cutting Luke's therapy?  How can they do that? 

Well, this is a catch 22 situation.  Yes, his occupational therapy has been cut by our state agency, but Luke will still receive the same therapy from the same therapist privately (meaning our insurance company will pay for their part of 40 sessions and we will pay our part and anything over those 40 sessions we are totally responsible for)  I know, you are still scratching your heads~like I said...it is all unfortunately, a game!  One that I am getting much better at playing. 

Here's the deal...the agency requires us to have the therapy at our house (which they say is law~so I found the law and it doesn't say that, Section M, # 5 said that therapy could occur in a setting other than the home, if it was best for the child) and because we were having therapy at the clinic and they "found out", they are going to drop this "service" from his IFSP.

I am here to do what is best for Luke and if having OT at Frank's office is the best possible therapy for him...that's what I am going to have happen...end of story.  I could list all the ways, the reasons, the research, etc. (and I will, they don't call me the Documentation Queen for nothing)  but right now isn't the time.  I am choosing not to fight this battle right now, because I have too many other irons in the fire.  If I diverted my attention to deal with this little problem, I would lose sight of what is really important right now and that is my time and energy.  Right now my time and energy is best spent with my family and getting ready for our big trip to the KCC.  I am keeping my eye on the prize :)

In reality, it is almost the end of the year and we are not near the 40 session limit because we just started OT in October (which is a whole 'nother subject in itself). 

But don't fret, we will revisit this at our BIG 6 month IFSP meeting, the one that will be at our place and on our terms with lots of special guests.  ;)

Ok~so back to the good stuff~today~We get to go to the college and watch Luke's therapy "behind the glass".  This will be special because we don't always take him (Suggie usually gets this honor) and Maggie gets to come with us because she is off from school, too. 
After VSU, we are heading back home for our private SL therapy with Mrs. Casey.  Luke loves Mrs. Casey and she loves him.  This is a picture of them at our church Fall Festival.
Getting all of our our therapies~or at least some of them~in this week (because of the holiday) is going to be difficult.  But with a little manuevering and a pinch of flexiblity, I think we can do this.  In fact, I know we can.
Just like I know I will have my "game" face on when the EI people arrive at 11:00.  Here we go~

Sunday, November 21, 2010

Sensory Processing

I found this site from another blog and found the ideas useful for any child~so I thought I would share.


Inspiration this Thanksgiving

Since it is Thanksgiving, I thought I would give you a glimpse of some of the many notes and letters of encouragement I have received.  I am so grateful for everyone's kind words.  They keep me inspired...to be a better mama and keep fighting the fight.  They are in no particular order, just numbered. 

Note #1~

Mary Clare,

I've been away from FB for a while, and just seeing your posts about Luke. I just wanted to let you know that by just reading your posts and blogs .... I can tell that you are an amazing mom doing an amazing job raising him.

I can not say that I know how you feel 100% ... but I did have to put both of my boys through speech therapy for much less issues than you are dealing with ... but did have to deal with out of pocket expenses because of insurance companies thinking that head injury, etc was necessary for payment.

I completely feel your statement on how people want to put their two cents in and say .... well my child had this. And that is certainly not my intention.

I just soooo feel for you and can somewhat understand your frustrations. It seems like you have a lot of faith and trust in God .... and I admire you for that. Just continue doing what u are doing ... being an amazing mom!! 

Prayers are being sent your way.

Note #2~

Well, I know you know early intervention is key and it's hard in a small town in the South. I'm not sure the level of care is there as there's fewer people for the DR's to see and learn from.

I don't know if you know that _____ was in speech therapy for 3+ years - not apraxia but articulation disorders and it was only that _____ has that set-up with the VSU Speech college, that I was able to get speech therapy.

Plus, _____ needed glasses for amblyopia and I didn't know.  Like you, I had my concerns from an early age. I had that kid at the eye DR from 6 months old and discussed the limited garbled speech with our DR and was told everything was fine because of hitting all the milestones. That still makes me mad.

That year we lived in ___. I grabbed every option I could. I got her in a music therapy class, a Montessori preschool school, and a Spanish language playgroup and gymnastics. All of that, plus an observant mom who told me ____ was cross-eyed when she colored probably saved my kid's literacy.

So, keep on plugging away and keep building all of the options and interventions you need. That's one bright, engaged and energetic kid in your pictures. It takes a good momma to help their child wire their brains to utilize their own unique skill-set, too.

I'm sure that's what we accomplished with ____ and so will you.  I'll be interested to read of Luke's progress and will be reading your blog!

Note #3~

_______ sent me the link to your blog and I want to let you and Brad know that I am praying for all of you and hope that Luke's upcoming therapies start him on the road to finding his voice.

There is nothing more heart wrenching than worrying about your child - I cannot imagine what you are going through.

I am just so grateful that God provided this sweet little boy with someone like you to be his advocate.

I did medical malpractice defense work for years and the one thing I learned doing it is that you have to seriously advocate and persist when dealing with doctors. You would love to think that every doctor had the time and inclination to do everything they can for each patient, but that's not reality.

Whenever I have a friend who is self-conscious about being pushy or aggressive with doctors, I always tell them that they are not there to make friends. They are there to get the best possible medical care for themselves and their loved ones. It is truly a situation where the squeaky wheel gets the grease.

All of this is to say that I truly believe that God put someone like you in Luke's life for a reason - your persistence and determination and unwillingness to take no for an answer are exactly what Luke needs - and exactly what is going to have him talking in no time!

I hope that this holiday season brings progress to Luke and peace and happiness to your family.

Note #4~

I just wanted to let you know that you are in my thoughts and prayers. I just read your blog this week.

I was unaware of the struggles you are going through. I can not imagine what you are going through with Luke and the frustrations with the treatments.

I am thankful for Luke that he is blessed to have such wonderful parents. I am confident that he will find his voice.

Love you

Note #5~

We haven't been officially introduced, but have chatted via discussion board! I'm a mother of three, my youngest of which is 4 1/2 and has CAS. I just thought I would touch base with you, and possibly give you a bit of additional hope for Luke!
We didn't receive an official diagnosis of CAS until my son was 3 and we started PROMPT based speech therapy when he was 3 1/2. Have you heard of PROMPT therapy? We have been in multiple speech therapy sessions per week (4) with 1 or 2 of them being PROMPT based. When we started, we really only had maybe 20 partial words. Over the last year and 1/2, we have had so much improvement - he speaks 4+ word sentences regularly, asks tons of questions, tells me what he is doing, and will initiate conversation with his classmates at preschool. We just started OT this week - he didn't qualify with our public school system, so we have started privately.

It has been slow going, and some ups, downs and some slow days and some where he is jamming in putting conversation out there.

If you are able to pursue PROMPT therapy (their website lists therapists in different areas), it has worked for us!

Good luck on your journey to the Kaufman location!

Thanks for all the support~keep those prayers and notes coming~they keep me going :)

The Cousins Are Coming~The Cousins Are Coming!

Thanksgiving 2009

Well, not all the cousins are coming~but at least 2 of them will be here for Thanksgiving.  (AC and the Gavinator)  We are having Thanksgiving at my parent's house this year.  Philip, Lauren and Anna Catherine are coming down.  Andrew Folse is coming with them.  We are also expecting Rip, Elle and Gavin :)

Rip and Elle


I will try to post more pics of the thanksgivings from years past~and from this year's gathering.  I love looking back at old pictures. Here are some of the kids at Wild Adventures~I guess we will have to try to make it to the park while everyone is here, too.

I am sure that we will also ride around on the "beep-beep". 
It is one of Luke's favorite things to do.

Hope everyone has a fabulous Thanksgiving with family and friends~Continued blessings for all!

Saturday, November 20, 2010

Roadblock #1

There have been a few roadblocks lately, but nothing that we can't handle.  When I am about to stress about these ubsurd things, I am reminded of this...

"Wait on the Lord: be of good courage, and He shall strengthen thine heart . . ." Psalm 27:14

(Thanks to a fb friend for sharing it ;) I love how God speaks to me, especially when I really need His word)

So, I am completing the paperwork for a grant to pay for the materials that will be used for Luke's therapy.  These materials are needed to try to replicate the therapies that he will experience at the KCC and to train our SLPs here specifically with these methods.

Roadblock #1
I realized that most of our doctors are too busy to write a letter to a non profit on our behalf, so I drafted one that they could use.  I called ahead and requested that the neurologist read and sign/approve our letter and was DUMBFOUNDED by the response.  I would need to be billed for a doctor's visit AND pay an additional $25 for the doctor to review the letter.  This would still not be a guarantee that he would agree to signing or approving the letter.  

I was seriously FLOORED~and still am.  This is the same doctor that billed us over $700 dollars for our last appointment.  Brad reminded me of this and that the test that they attempted that day was not valid~that is the reason we are having to do it again this week with sedation at SGMC. 

This is totally unexceptable.  Especially since this same doctor had assured us that he would help us gain grants and assistance.  He failed to mention that there would be a charge for this help.  :(

Getting Around Roadblock #1
Where there's a will, there's a way~and no one can stop my mission.  I have a timeline that I am trying to stick to because there are other people involved.  (The agency that is representing us in submitting the grant and the non profit that is granting the requested support)

I emailed our pediatric geneticist and our genetic counselor with the exact same request about signing off on the letter.  The genetic counselor answered me almost immediately with a resounding YES~they would get it done by next week.

I am still aggravated that I had to email someone that we have only seen 1 time for help, when the doctor that I am still making payments to was going to charge me for the same deed.

Pray that I can stop myself from telling his wife about this when I see her.  I hope that I can bite my tongue, but knowing me, probably not. 

And to tell you the truth, I would want to know if my husband was charging people for his signature.