Cementing Her "D"

We were really at a critical point with Rachel's speech, so we decided that despite it being her birthday, we were going to proceed with our normally scheduled Wednesday afternoon speech session.

Rachel has been having problems with making the "D" sound in her words, especially when they are in the middle of the word (DADDY) and when they are the final letter in a word (hard, card, etc). So for the few weeks leading up to speech on Wednesday, we've really been working on the sound of "D". Drilling it, reenforcing it in our everyday speech, etc.

This last Wednesday, after a little bit of drilling to see where she was, and how she was doing, it was determined that Rachel was ready to 'cement her "D" sound". She'd been hitting it about 90% of the time and it was was time to make it permanent. Thus the reason/need to cement it.Rachel was very proud of her accomplishment, as you can see by the expression in that last picture! It was a fun speech activity to do, even if it was her birthday! :)

Appointment with Dr Martin

It's hard to believe that next week will be 7 months since Rachel's bone graft and nose revision!

We had a follow up appointment with her plastic surgeon this afternoon. We had a letter from our Speech Therapist outlining some concerns she had in regards to Rachel's hyper-nasality in her speech from time to time and her concern for a possible fistula (hole) in the palate.

Dr. Martin checked out Rachel's nose and inside her mouth and while he didn't see anything, he went ahead and ordered a Fistulagram.

The procedure is a special XRAY whereas Rachel will need to swish contrast about in her mouth and then they'll Xray her facial bones to see if the contrast finds any holes in her palate and the contrast travels. This procedure is pretty accurate and this will give us an answer as to whether or not Rachel has a hole in her palate, or if she's just lazy in her speech. I'm pretty sure it's the latter. But it'll be nice to have a test to rule out the other.

Update: Speech Therapy

It's been a while since I've updated about Rachel's ongoing speech therapy.

Rachel continues to receive one on one Speech Therapy once a week here in the comfort of our own home. We are so blessed to have a speech therapist that comes to our home to do speech therapy with Rachel. Dr. D'Antonio spends countless hours outside of therapy time preparing and planning for Rachel's speech. We know how lucky we are, for if Rachel was receiving Speech Therapy at school, it would be in a group setting, and not tailored for Rachel's specific speech needs.

It's hard to believe that we're coming up on eleven months of therapy. With the exception of three, maybe four times, we've had therapy every week since May of last year! It's encouraging to see all the hard work paying off through compliments of other people, and the clearness of Rachel's speech.We've recently moved on to the last sound that Rachel needs to master. That sound is the sound of the letter "R". This task will take some time and then it'll be on to some "R" blends and ultimately working on carrying over things learned to conversational speech.

A lot of weeks, Rachel doesn't open up and talk excessively with Dr. D when she comes to do therapy. Dr. D will ask about Rachel's school day and the previous weekend. Sometimes, most of the time, it's like pulling teeth to get Rachel to talk. Which is frustrating because at the dinner table she's the last one eating as the rest of us have finished eating as she's been talking the entire time. LOL. So today, we did speech therapy in a different way...

Today, we went to lunch with Dr. D'Antonio and then went to Toys R Us to help point out some games that could easily be converted to games she can use for speech fun. Being away from the kitchen table, the usual place of therapy, proved to be very helpful. Dr. D'Antonio said at the end of our time together that what she got today was equivalent to what three weeks of therapy would have been. Rachel was talkative and relaxed and had fun looking for sounds she's worked on in the kids menu. It definitely was a nice change for therapy. It also gave Dr. D an idea as to where to go from here. It was a successful outing that may have to be worked again.

Surgery and Rachel's Speech

Upon getting in to Rachel's mouth, Dr. Martin discovered an extensive hole in Rachel's hard palate that extended all the way back to the soft palate. He fixed it. And as the days went by following surgery, as the swelling started to decrease inside her mouth and in her nose, I started to notice Rachel's speech was sounding differently. It was more clear and crisp. Once the nasal stents came out, it was even more noticeable.

This past Wednesday, Rachel had speech therapy. It was the first time Dr. D'Antoino had seen her and heard her since surgery. It was a lot of work to get Rachel to talk that day, she was tired from school, shy for some reason, all the while still just being 2 weeks post op from major surgery.

But the little that she did talk was just enough. I wasn't wrong in my thinking that Rachel's speech had changed. Dr. D'Antonio heard it as well!! Rachel had less nasality (because the hole in her hard palate had been closed) and her production was clearer. Dr. D'Antonio was very excited and very pleased with how Rachel's surgery had already affected her speech. Dr. D'Antonio and Rachel, the week before surgery.
Rachel still has a lot work in regards to her speech and sound production. But it's exciting to have this positive outcome from surgery and we really weren't expecting it!

A Speech BreakThrough!!!

Rachel has been receiving one on one private speech therapy now for the last 8 weeks. The therapist comes to our house once a week, and does therapy for one hour. She pours her heart and soul into planning the lessons and therapy for Rachel each week. She recently purchased a computer program that she's added to their lineup of therapy, which Rachel loves. She's made a treasure box and set up a reward system for earning treasures and stickers and really works well with Rachel.

Wednesdays is speech day. When school starts up in 2 weeks, Wednesdays will be minimum days for the girls which will still work out perfectly for Rachel and our weekly speech.

When Dr. D'Antonio first evaluated her over 8 weeks ago, we learned that Rachel's speech was worse than we originally thought. She has what's called a Phonic Awareness Disorder in addition to other speech issues. There are certain sounds in the middle of words that she simply does not hear. Her hearing is fine, it's that she doesn't hear the phonetics.

For the last few weeks, we've been working and dwelling and working hard on distinguishing between certain sounds. Tooth tapper sounds such as the 'th' sounds and lip biter sounds as in 'f' sounds, etc. We have homework and things to work with Rachel on during the week and we've been really good about it (we aren't paying the big bucks to not do our homework! LOL).

This morning, Dr. D'Antonio brought along a colleague, a speech pathologist who specializes in cleft affected children birth to three years of age. Together they did therapy and it gave Dr. D'Antonio a change to get the thoughts and opinion of another pathologist. The most exciting news is that she was BLOWN AWAY with the breakthrough that Rachel seemed to have reached this last week!!! It's like something clicked and she got EVERYTHING correct and made all the sounds perfectly the first try and was able to self correct on a few words without prompting for correction! She's even cleaned up sounds that were first documented as problem sounds in the initial evaluation without having even been worked on!

We are so excited for this breakthrough! And so very thankful the Lord brought Dr. D'Antonio into our lives to help Rachel...

Speech

Since my last update of where we stood on Speech, things have only gotten better!

The Speech Therapist, Dr. D'Antonio, and I have talked via emails, via the phone and to make a long story short, Rachel will begin with her TOMORROW!!! Here in the comfort of our own home!

Dr. D'Antonio will first evaluate her herself over the course of the next week or two, and then depending on what she learns about Rachel's speech needs, she will then begin therapy on her....in our home!!!

One of the things we talked about was a reward incentive for when Rachel excels and does her best, etc, etc. And Dr. D has put together a treasure box of stickers and girly things that will interest Rachel.

Rachel is excited. She asked me this morning how much longer until her Speech Day. She's so cute about it too.

We're not sure where they will do speech - kitchen table, dinning room table, her room, etc. But it's given me the opportunity to get into Rachel's room and clean it and organize it real good. Separating the food in her little kitchen from the dishes, reorganizing all the little people sets we have, washing the mirrored doors, and even cleaning the carpet with some resolve. Her room is ready should that be the place where they will do therapy!

Dr. D'Antonio is willing to work with us as far as the amount of payment is concerned. Our biggest concern was that we'd be shoveling out this money and because we are doing this privately, on the side, that the money would not go towards Rachel's yearly medical deductible. But you know, the Lord cares even about that! After I called our insurance company, the agent told me exactly how to submit the bills for credit towards our deductible!!

I am so blown away by how the Lord opened these doors. He never ceases to amaze me what He is capable of. And I am thankful beyond words...

Speech: Something Wonderful

Rachel needs speech. No new news there. It's getting a little bit harder to understand her, and I'm not sure if it's cause she's talking so fast, has tons to say, it's her speech issues, or all the above.

I've been dragging my feet in moving forward since our big setback over two months ago. I've done some checking and called a few places here and there, but not ever whole heartedly committing to getting the job done.

About two weeks ago, long story short, the wife of our Karate Instructor had previously told Steven, and then was telling me about her friend who used to work at Loma Linda doing Speech Therapy, yadda, yadda, yadda. She contacted the friend, asked if she might be interested in doing private speech therapy on the side. She told her yes and her email address was given to me.

Turns out, this therapist used to be one of the top speech pathologists at Loma Linda. I had always heard great things about her back in the day when I was working at Loma Linda, her name and reputation was known.

I finally emailed her last night, asking if she'd consider working with Rachel. I gave her Rachel's history, details of her previous speech therapy, and the recent situation with the school, etc. And the situation with our insurance and Loma Linda's billing, etc.

She emailed back this morning. And I am so excited!

She is willing to work out something and perhaps do therapy on Rachel if she feels she needs it. But what's exciting is that she's meeting with Rachel's previous Speech Therapist the week after next to possibly start looking into renting space and starting their own speech therapy clinic of some sort. My next step is copy all the records I have regarding Rachel's speech and her recent evaluations from the school district speech therapist and mail them to her for review and then we'll go from there.

At any rate, I'm excited about what the future holds for Rachel and speech therapy!

Speech Woes

It's not new news when I say Rachel needs Speech Therapy.

It was recommended at last years Craniofacial Team Appointment to get it through the school system. But at that time, we were waiting to see if Rachel would be accepted at the Elementary School that Hannah attends. Once we received word that she was accepted, it was too late in the school year to try and obtain services through the school system. So we waited until the new school year.

On the first day of school (August 4th), I was ready with a letter to the Principal requesting a speech evaluation. It's taken a lot of poking and pushing, but in the last two weeks Rachel is FINALLY being evaluated by the school speech therapist and an IEP is being drafted as to the plan of approach as far as speech therapy is concerned.

However, this morning, I was hit with yet another road block.

Long story short - Rachel attends this school on an inter-district transfer from the school district in which we live in and are supposed to go to. If I continue to seek out help from the school in which she attends, there is the strong possibility that it will affect the decision in whether or not her transfer into the district is accepted next school year.

Sadly, it all boils down to money.

The money that the State gives to the school for attendance follows Rachel no matter what school she goes to. However, the monies for special educational services, such as Speech, does not follow her. And why would the district that we are currently attending fork out the money for special ed services for a child who doesn't really belong in their district anyways??

After being dealt this blow by the Speech Therapist, and having a spontaneous meeting with the principal, and getting more details from him. I decided I would try to obtain therapy through the therapist on the Craniofacial team, rather than jeopardize our placement at this Magnet School.

Thankfully, after contacting the therapist through the team, she has agreed to take on Rachel for therapy, and will see her once a week for an hour. The bummer part of it all is that we will now have to pay for the services, and our insurance doesn't cover any of it until we've met our deductible. But, you get what you pay for! :) And it's all part of the Lord's plan, and the Lord knew this would be better for Rachel.

But on the bright side, the very bright side, Rachel will be receiving one on one speech therapy for an hour every week. In the public school, she would be going to speech therapy in a group setting for half an hour. And like many have said, the caliber of therapy she'll receive through Loma Linda University is far more superior than she would have gotten through the public school system.

The process has been started to obtain authorization from our health insurance. And next week, at the scheduled IEP meeting, we will be formally denying services through the public school system.

It's just a detour on this journey. One of many more to come, I'm sure...

Parent / Teacher Conference and a Speech Update

This afternoon was our Parent/Teacher conference with Rachel's teacher, Mrs. Maingot. The conference went very well and she's already proving to be advanced in her Language Arts and Math! She listens well, follows directions, and has a great interest for learning. We were very pleased with how her first trimester of Kindergarten has gone.

Last Friday, we met with the Speech Therapist, the Assistant Principal, and with Rachel's teacher to talk about the need for further evaluation of her speech. It was a very short meeting whereas the teacher expressed her concerns, the Speech Therapist addressed what she saw in her initial brief screening, and we expressed our concerns. The next step is for a full Speech Evaluation and then we'll meet again to set up an IEP (Individualized Educational Plan), and then she'll begin Speech Therapy.

It's such a process with the public school system. But I'm thankful it's available and soon she'll be getting the services she needs. And it'll be school based which means the teacher will know whats going on, and can help in the classroom, etc. We go off track the end of next week for three weeks and then back for three weeks in December and then it's Christmas break, so more than likely, Speech won't begin until January.

Speech Therapy Update

Monday mornings I work in Rachel's classroom. This morning as I was putting my purse away, she handed me this envelope that was in her cubby. It was from the Speech Therapist.

Rachel was apparently pulled from class one day last week and was screened by the speech therapist and the conclusion was a concern for her articulation (sounds in words). Rachel has "nasality with certain sounds (b, p...) and distortions typical of a repaired cleft palate". There were no language concerns, she puts sentences together very well. And there were no fluency or stuttering concerns. Her concerns were our concerns and the same concerns of the Speech Therapist on our craniofacial team.

The recommendation is that Rachel "be referred to the Student Study Team for intervention strategies and/or consideration for possible evaluation."

I had to ask the teacher for clarification on what exactly that meant. LOL. Rachel was just screened by the Speech Therapist. And her recommendation is that now a team of people get together to talk about Rachel and what to do. Her teacher must submit paperwork and then they go from there.

The good thing is Rachel wasn't denied right off the bat, like we were told was a possibility...

Seeking Speech Therapy and Thoughts About Starting School

At Rachel's craniofacial team appointment back in January, the Speech Therapist recommended speech therapy for Rachel. It wasn't bad enough to warrant going to Loma Linda weekly, but enough to seek help from the school district. Because we were in limbo about where Rachel would be going to school, we needed to wait to see where it was she'd go once accepted or denied. Once we learned she was accepted to the school Hannah is at, it was too late in the school year to seek out a speech therapy evaluation.

So, I was prepared the first day of school. I wrote a letter to the principal stating my request for an evaluation and then gave a little history on Rachel and her birth defect and how she's already had speech, etc, etc. I included a copy of the team report, highlighting the section from the speech therapist.

During Kindergarten Orientation on Tuesday, we got a chance to talk to Rachel's teacher. We briefly told her about Rachel. I wanted her to be aware of her birth defect especially because sometimes when she smiles big, you can see that her front top teeth are jacked up, in addition to her nose being a little off. I also made her a copy of the letter to the principal and the team report and let her know we were seeking a speech evaluation. She told us that she's had a cleft affected child once in recent years and the district at that time refused to evaluate him/her. But the district has a new speech therapist now and things could very well be different. If Rachel is denied speech therapy by the school, we'll seek it elsewhere, but it'd be nice if she was given it through the school.

I have to say, I'm a little nervous about Rachel and school and the other kids. Up to this point, she's really had no one ever tease her about her nose. Kindergarten could be the year it starts. Maybe not. We talked extensively to the plastic surgeon back in January about having a nose revision done before school started, but the things they would work on weren't the things we were concerned about as far as the appearance of her nose. It would have been an unnecessary surgery at this time. We need to wait for her face to grow some more before anything noticeable would be done. On an interesting note, the tooth we refer to as her 'special tooth' which is located sideways up in her gum is starting to straighten and come down! We're not sure what that means, but it has to be better than staying high up in the gum.

Other than those worries, I know she'll be a success in Kindergarten!

Lots of Joy!

Rachel singing "I've got the Joy" while also demonstrating how well her speech is!

Cranio Team and Rachel's Speech

February is usually the month in which we meet with Rachel's Craniofacial Team , where she is evaluated and things are discussed about her overall well being as well as the areas in which there are concern. Because 2008 looks to be a relatively quiet year as far as Rachel's health issues are concerned, and because we are 100% financially responsible for the $733 appointment bill, we sought the team director to be excused from this years appointment. We found out last week that we can skip this years appointment and see the team in 2009!

I also found out through talking to the nurses that Rachel's speech therapist is no longer working for Loma Linda, which was kinda sad, but if Rachel needs speech in the future, she is now eligible to receive FREE services through the public school system.

Rachel's speech in the last several months and even more so in the last couple of weeks, has blossomed so much. It really is amazing how well she carries on a conversation. Most times she talks nonstop. Recently, I was paid a compliment by my cousin in regards to how well Rachel talked. She was astonished that Rachel was only three and spoke so well and in so much detail. My Aunt who also carried on a conversation with Rachel said the same. It's always so nice to hear people compliment Rachel's speech, especially those who are not around her often.

Evaluation with the Speech Therapist

This morning Rachel had an evaluation with her speech therapist. In the past, for a previous evaluation, as well as most of the time when she was in speech therapy, Rachel doesn't cooperate very well as far as talking. We were hoping today would be different. It wasn't. LOL. Once Adrianna stepped foot into the exam room, Rachel stopped talking. After a while we were able to get her to say some words with the help of some M&M's.

With the speech she was able to observe, Adrianna was very pleased with Rachel's progress and said her speech development was typical of a normal 3 year old and that Rachel's speech will only get better once she starts preschool next month. Rachel's speech is not nasally (something common in cleft palate babies) and the glottal sounds we were once concerned about, she no longer makes.

So for the time being, no need to reinstate speech therapy, or even look into the speech services through the public school system. We'll watch and see how her speech progresses in preschool and re-evaluate in February, when we see the Craniofacial Team, and contact her sooner if her preschool teacher has trouble understanding her or her speech isn't up to the level of the rest of the kids in her class.

From the moment we walked out the door, all the way home, Rachel didn't stop talking. Little Stinker.

Speech Update

Rachel had speech today, not our normal speech day, but due to a scheduling conflict we met today instead of on Wednesday.

Rachel has really progressed the last couple of weeks with her speech. She talks all the time, and lately not just in jibber jabber, but in actual words you can understand. Leaving me questioning why it was we were going to speech once a week. So when Rachel's speech therapist called a few days ago to rescedule our appointment, I talked to her about the possibility of perhaps only meeting once every 3-4 weeks. And our therapist agreed.

So for now, Rachel will go every 3 weeks to speech therapy. I am so looking forward to not going every week!

Gramma Comes to Speech

Gramma came with us to Speech today. She got to see firsthand at how Rachel clams up and doesn't talk much when in the pressence of her Speech Therapist!

Gramma took this picture of Rachel playing Peek-a-Boo
behind the glass window and chair.

Just Another Fun Day at Speech

Using puppets to get Rachel to talk.

Speech

Today was Rachel's Speech day. We've been going to Speech once a week for the last 14 weeks. She's getting better at talking with Adriana, her therapist. And she jibber jabbers all day long at home. Defiantely improving.

After todays session, we have five insurance approved sessions left. I asked Adriana what her plan was for Rachel. While she has improved tremendously, she'd like to go ahead and evaluate Rachel as to how far she has come and then request five more sessions from our insurance to finish working on a couple of letters and do some "cleaning up" of her jibber jabber.

I'm hoping that because I asked early enough, she can get to working on getting approval from our insurance so there won't be a lapse in therapy once our five sessions are up.

Speech Session # 4

Today was Rachel's fourth session of speech therapy, and let me just start off by saying how incredibly smart Rachel is. She must know that the entire purpose of going to this appointment week after week is to get her to talk, because the minute we enter into the pressence of our Speech Therapist, Rachel doesn't say a single word, mutter any jibber jabber, or make a single peep...for the entire HOUR we are with her! LOL.

We have seen improvements in her trying to express herself. And she will do the things that Adrianna has us work on. But as far as exhibiting her improvements to the professional who's helping her, she doesn't. Therefore, we now are going to try and video tape her talking so that we can prove her increasing vocalness.

Speech Update

Rachel started speech with the Speech Therapist with our Craniofacial Team yesterday. Her speech therapy appointments are one on one, so the therapist can really zone in on Rachel and her needs. Rachel appeared to have fun. At this age, therapy is mostly playing with toys and word repeatition. Therapy will be once a week, so I would imagine over the next couple of weeks with the continued working with her, we might see some improvement in her speech.

However, on the other hand, we received a certified letter in the mail today from the local Early Start offices. The letter stated that "the request for Early Start eligibility has been denied because Rachel is not at high risk for developmental disabability". The letter also stated that if she still does not have 2 word phrases by the time she is 2 years of age, to contact them.

So they basically determined she wasn't eligible for services by the things I told the lady on the phone last week. Me telling her that my almost 20 month old only speaks at the most 15 words wasn't considered a developemental disability?? And they want us to wait until she is 2 to contact them again?? What's the purpose of the phrase "Early Start" if they don't do anything until "later"??? Needless to say this is frustrating. I've already left two messages on voice mail looking for answers.

Nothing is ever easy. LOL.

Thankfully, the Early Start services were going to be supplemental to the therapy she's getting through our medical coverage, and not our only hope. But I still plan on trying to get the services.