Here's Levi showing off some of his new sounds. I think being giggly is half of his problem. ;)
Tuesday, October 30, 2012
Monday, October 29, 2012
The Good, the Bad, and the Forming of a Plan
What do you want first? The good news or the bad news? We will start with the good.
The Good
Praise God we were able to go to Levi's appointment today with the Speech Pathologist at UNMC! I kept waiting for the phone to ring saying that they needed to cancel (because I'm paranoid), but it happened! So thanks for praying. Overall the appointment went well, I think. The Speech Therapist, Paul, was super friendly and he and Levi hit it off. At one point he had Levi rolling in laughter while playing with the bubbles. He also definitely has great skill in getting Levi to make new sounds. He would get Levi to do a series of 10-20 attempts at a sound by not letting Levi do an activity until he made the sound. They were building a puzzle truck toy and for each piece, Levi had to make the /ou/ sound, the closest thing Levi could attempt at this point to say "out". It took a lot of concentrating and studying Paul's face, but Levi was able to say it! He did the same thing with "my". It took some work, but Levi was able to say it! I was getting choked up in there hearing these new sounds out of my sweet boy's mouth.
The Bad
Paul's assessment of Levi was a bit hard to hear. First, he feels that Apraxia is something that really can't technically be diagnosed until a child is 7-8 years old. For you to know that the delay is truly not caused by anything else, you can't be sure until other causes are ruled out, which is a matter of age and time. So, while Levi may have delays consistent with Apraxia, he would not diagnose it. Second, in his estimation, Levi has motor planning issues. (In my reading, many see that as the same as Apraxia, but apparently there is a difference somewhere.) He noted that as Levi was making the /ou/ sound and saying "my", he could say it once and then not remember how to do the next time. He also could say ba ba ba ba, but to only say one ba was difficult. That rang as a motor planning problem to him. He also noted that Levi perhaps appeared to have "Limb Apraxia" or motor planning issues with his hands, arms and legs as well, which is something I had suspected, but was still disappointed to hear. Signing is difficult for him, he still cannot point to facial features correctly, and he even as an infant until now, there has been some evidence to motor planning issues in a few areas. Third, he was concerned about the regression as well. Usually it is Autism in his experience, but he was leaning towards not thinking Levi was Autistic. That would be hard to call in the short time they were together and Levi's other therapists and pediatrician are adamant that isn't the cause. I agree that that is not the case. That being said, the cause of the regression could be something "scary" in his words, or a mystery we will never understand. He thought we were taking wise steps to seek a neurologist.
The Plan
Where on earth do we go from here? Good question. I have no idea, but here's the current plan... For starters, Paul is going to see Levi twice a week for 30 minutes at a time. I am very excited about this as he made the most progress we have seen thus far. The downer is that it is on Mondays and Fridays, about a 30 minute drive away, and Abby has preschool Tuesdays and Thursdays. So, I will be using lots of gas and free mornings. Overall, a small price to pay to get Levi what he needs. And the clinic is free, which is amazing! Here's a link to it if you're interested. We are also going to continue seeing the speech therapist through Early Intervention. I am going to see if I can meet with her twice a week for shorter times instead, but I'm not sure if that will work. The more frequent, brief sessions, the better. We are also going to look into seeing if Early Intervention will have him evaluated for physical therapy and any global motor planning problems they could assist with. Finally, we are going to figure out a system to get him to communicate in a new way. Paul thought that pictures that he could point to or special Ipad apps would be very helpful for him. He needs to see that he can "control his world" in Paul's words and starting to point at pictures of what he wants will get him to open that communication door, we hope.
So, overwhelming. Never in a million years did I ever think this is where things would be now just a year ago, but God knew! Although he may have challenges we didn't foresee, Levi is still a sweet, funny, cuddly guy that we love so much it makes our heart hurt. And I wouldn't have him any other way.
I will end with a funny note. As the session was coming to an end and Levi had gotten used to having to mimic all of the sounds coming out of Paul's mouth, Paul was looking at his schedule and blew out of his mouth an "I'm overwhelmed at how busy I am" kind of sound and Levi, playing with his trains on the table, immediately blew and made the same kind of sound. We all got a kick out of that. He also would scrunch up his nose sometimes trying to make the /ou/ sound, and Paul said "oh, sorry... did I scrunch my nose on you?" Monkey see, monkey do.
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| Levi, holding his sucker, waiting to see Paul, and feeling like he's big stuff. |
Praise God we were able to go to Levi's appointment today with the Speech Pathologist at UNMC! I kept waiting for the phone to ring saying that they needed to cancel (because I'm paranoid), but it happened! So thanks for praying. Overall the appointment went well, I think. The Speech Therapist, Paul, was super friendly and he and Levi hit it off. At one point he had Levi rolling in laughter while playing with the bubbles. He also definitely has great skill in getting Levi to make new sounds. He would get Levi to do a series of 10-20 attempts at a sound by not letting Levi do an activity until he made the sound. They were building a puzzle truck toy and for each piece, Levi had to make the /ou/ sound, the closest thing Levi could attempt at this point to say "out". It took a lot of concentrating and studying Paul's face, but Levi was able to say it! He did the same thing with "my". It took some work, but Levi was able to say it! I was getting choked up in there hearing these new sounds out of my sweet boy's mouth.
The Bad
Paul's assessment of Levi was a bit hard to hear. First, he feels that Apraxia is something that really can't technically be diagnosed until a child is 7-8 years old. For you to know that the delay is truly not caused by anything else, you can't be sure until other causes are ruled out, which is a matter of age and time. So, while Levi may have delays consistent with Apraxia, he would not diagnose it. Second, in his estimation, Levi has motor planning issues. (In my reading, many see that as the same as Apraxia, but apparently there is a difference somewhere.) He noted that as Levi was making the /ou/ sound and saying "my", he could say it once and then not remember how to do the next time. He also could say ba ba ba ba, but to only say one ba was difficult. That rang as a motor planning problem to him. He also noted that Levi perhaps appeared to have "Limb Apraxia" or motor planning issues with his hands, arms and legs as well, which is something I had suspected, but was still disappointed to hear. Signing is difficult for him, he still cannot point to facial features correctly, and he even as an infant until now, there has been some evidence to motor planning issues in a few areas. Third, he was concerned about the regression as well. Usually it is Autism in his experience, but he was leaning towards not thinking Levi was Autistic. That would be hard to call in the short time they were together and Levi's other therapists and pediatrician are adamant that isn't the cause. I agree that that is not the case. That being said, the cause of the regression could be something "scary" in his words, or a mystery we will never understand. He thought we were taking wise steps to seek a neurologist.
The Plan
Where on earth do we go from here? Good question. I have no idea, but here's the current plan... For starters, Paul is going to see Levi twice a week for 30 minutes at a time. I am very excited about this as he made the most progress we have seen thus far. The downer is that it is on Mondays and Fridays, about a 30 minute drive away, and Abby has preschool Tuesdays and Thursdays. So, I will be using lots of gas and free mornings. Overall, a small price to pay to get Levi what he needs. And the clinic is free, which is amazing! Here's a link to it if you're interested. We are also going to continue seeing the speech therapist through Early Intervention. I am going to see if I can meet with her twice a week for shorter times instead, but I'm not sure if that will work. The more frequent, brief sessions, the better. We are also going to look into seeing if Early Intervention will have him evaluated for physical therapy and any global motor planning problems they could assist with. Finally, we are going to figure out a system to get him to communicate in a new way. Paul thought that pictures that he could point to or special Ipad apps would be very helpful for him. He needs to see that he can "control his world" in Paul's words and starting to point at pictures of what he wants will get him to open that communication door, we hope.
So, overwhelming. Never in a million years did I ever think this is where things would be now just a year ago, but God knew! Although he may have challenges we didn't foresee, Levi is still a sweet, funny, cuddly guy that we love so much it makes our heart hurt. And I wouldn't have him any other way.
I will end with a funny note. As the session was coming to an end and Levi had gotten used to having to mimic all of the sounds coming out of Paul's mouth, Paul was looking at his schedule and blew out of his mouth an "I'm overwhelmed at how busy I am" kind of sound and Levi, playing with his trains on the table, immediately blew and made the same kind of sound. We all got a kick out of that. He also would scrunch up his nose sometimes trying to make the /ou/ sound, and Paul said "oh, sorry... did I scrunch my nose on you?" Monkey see, monkey do.
Wednesday, October 24, 2012
Levi Today
Here is where Levi is at today with his speech, after three months of speech therapy through Children's Hospital and Early Intervention. While he has added a few new sounds, such as /t/ /h/ /p/, the only word that he says that is able to be understood is "mama". A few things from this video that point to Apraxia:
- You may notice that he also pauses between saying two sounds, like Abby sounds like "Ah eee" not"Ahee".
- He also drops of the consonants of any word that he is saying, other than "mama", as you can tell in "Ah eee" for Abby.
- He has problems pointing to features on his face correctly when named sometimes. This can be a sign of Apraxia and part of the mental block between the brain and the mouth/face.
A few have you has asked me if Levi is really frustrated and I would say yes, but it's really hard to say what is him just being a two year old and what is due to lack of being able to communicate. The greatest example of frustration is that riding in the car has become very difficult. He sits in his seat and points to stuff on the floor yelling "mama... mama.... mammmmaaaa!" and I have no clue what he wants. It is not easy to drive and figure out what of the 50 things he wants (it could be anything in my purse, buttons of the dash, toys on the floor, etc.) and he usually ends up crying and giving up, definitely frustrated. Sometimes I figure it out and tell him no he can't have it, but if I can't figure it out, the poor guy just gets sad. When we are home though, generally he just goes after what he wants without asking. He is very independent for the most part and will narrate in his own language along the way, but overall in those situations he is fine. It's when he can't get an item and is unable to communicate with those who can get it that he really is upset.
We are anxious for the appointment on Monday! We heard from another speech therapist that this is "The Guy" to go to in the region, so we are hoping for some answers, or at least a plan to move forward. Isn't he the cutest though? This guy will want to give him therapy just on the cute factor alone.
Friday, October 19, 2012
A Voice for Levi
So now for the latest change in 2012 for the us. Some of you know that Levi, who is now two and three months, has been in speech therapy since turning two. At two, he had few words, around 10-15, and didn't use them very often, so we hoped therapy would help encourage the speech process along for him. In some ways it has gone well as he really enjoys it, tries very hard, and has repeated a few new sounds back to us. However, during this time he has not had any overall speech improvement and has actually lost any spontaneous use of words, except for the word "mama".
Last Friday in one of his speech sessions, his speech therapist through the school district mentioned that she thinks he may possibly have something called Apraxia (also known as Childhood Apraxia of Speech). With Apraxia, kids know what they want to say and have a grasp on language, but their brain is unable to send the message to their mouth to form the words. They essentially cannot naturally tell their mouth how to move to form the words they want to say. It is a neurological disorder that can be genetic or, rarely in the case of children, caused from some neurological damage. After hearing this news, we met with his pediatrician and another one of Levi's speech therapists and both also had concerns regarding his speech regression and lack of progress. Because Apraxia is so rare, none of them feel comfortable enough to diagnose it or perhaps even give him the treatment he needs if it is indeed Apraxia. We have now been directed to have him evaluated at a clinic in Omaha that is "the authority" in the area on Apraxia, the Munroe Meyer Institute, and have an appointment for October 29th. We also have an appointment for January 2nd for him to be evaluated by a Pediatric Neurologist to make sure there are no other underlying causes of the regression.
So, where this all leaves us today is with a few major changes. First, there is hope that Levi will learn to speak (in general Apraxic kids are able to do this), but it takes hours and months and years of therapy. Lots and lots of therapy. So the first major change is that we will be turning things up a few notches with him, doing therapy three to four times a week with even more supplemental practice added in daily with Brian and I. Whether he is diagnosed officially with Apraxia or not, the therapists all agree that he needs more treatment than he's getting now.
The second major change is a perspective shift. Levi has lots to say, this has always been clear, but now we know that the reason he isn't communicating it clearly is because he can't. How frustrating for him! The huge change in perspective is just the understanding that this will most likely be the case for quite a long time. And as he gets older, with friends, in public, at church, etc. it will only get more frustrating for him as the gap gets larger between him and other kids his age. We are going to need to find new strategies and ways for him to get what he wants to say across, and thankfully with the help of technology and sign language, we can begin to walk down that road. The center in Omaha where he is going to be evaluated specializes in helping in these areas.
The third change, while not so major, is that I would like to blog a bit through this process for few reasons. First of all, there are many out there who love and care for Levi and this will be an easier way to update all without having to repeat everything umpteen times. I also want to blog about this so that I have a record of how things are progressing and improving for him. I hope to put video on here, as I already wish I had video of the words he used to say before he regressed. But third, I would like to blog about it so that others who are perhaps in the same situation will have more information and bearings for this speech journey. There is so little out there on Apraxia and the little information that is out there is rather bleak in nature, so if we can help anyone else as we go down this unclear road, that we are eager to do that.
So, in the mean time, if you think about it would you pray for Levi and our family? Pray that we can know the correct path to take to get Levi the help he needs, that there is nothing else that is going on neurologically to be concerned about, and also for patience as we are anxious to get Levi the help that he needs as soon as possible. With Apraxia, the earlier the treatment, the greater and faster the success and I am an impatient person in general. Add in the fact that this involves the health and well being of one of my kids and two seconds seems like to long of a wait.
I plan on updating after his appointment on October 29th and perhaps do a video in the meantime to log of where we are now. And to show off his cuteness. :) Thank you for praying!
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| Levi feeling pretty awesome in his new pants. |
So, where this all leaves us today is with a few major changes. First, there is hope that Levi will learn to speak (in general Apraxic kids are able to do this), but it takes hours and months and years of therapy. Lots and lots of therapy. So the first major change is that we will be turning things up a few notches with him, doing therapy three to four times a week with even more supplemental practice added in daily with Brian and I. Whether he is diagnosed officially with Apraxia or not, the therapists all agree that he needs more treatment than he's getting now.
The second major change is a perspective shift. Levi has lots to say, this has always been clear, but now we know that the reason he isn't communicating it clearly is because he can't. How frustrating for him! The huge change in perspective is just the understanding that this will most likely be the case for quite a long time. And as he gets older, with friends, in public, at church, etc. it will only get more frustrating for him as the gap gets larger between him and other kids his age. We are going to need to find new strategies and ways for him to get what he wants to say across, and thankfully with the help of technology and sign language, we can begin to walk down that road. The center in Omaha where he is going to be evaluated specializes in helping in these areas.
The third change, while not so major, is that I would like to blog a bit through this process for few reasons. First of all, there are many out there who love and care for Levi and this will be an easier way to update all without having to repeat everything umpteen times. I also want to blog about this so that I have a record of how things are progressing and improving for him. I hope to put video on here, as I already wish I had video of the words he used to say before he regressed. But third, I would like to blog about it so that others who are perhaps in the same situation will have more information and bearings for this speech journey. There is so little out there on Apraxia and the little information that is out there is rather bleak in nature, so if we can help anyone else as we go down this unclear road, that we are eager to do that.
So, in the mean time, if you think about it would you pray for Levi and our family? Pray that we can know the correct path to take to get Levi the help he needs, that there is nothing else that is going on neurologically to be concerned about, and also for patience as we are anxious to get Levi the help that he needs as soon as possible. With Apraxia, the earlier the treatment, the greater and faster the success and I am an impatient person in general. Add in the fact that this involves the health and well being of one of my kids and two seconds seems like to long of a wait.
I plan on updating after his appointment on October 29th and perhaps do a video in the meantime to log of where we are now. And to show off his cuteness. :) Thank you for praying!
Tuesday, October 16, 2012
Catching Up
What hasn't changed, is Brian's job. Many people ask us, so to clarify he is not a pastor at the new church. We are simply heavily involved in helping plant it and leading in areas as needed. Another thing that hasn't changed is that I am still doing event planning on a part time basis as I stay home with the kids. That makes for about 2 1/2 full time jobs. Levi is one person's full time job. Abby, Jonah, and Brian are another. Finally, another thing that hasn't changed is that the kids are still amazingly cute, in case you were concerned. As proof, here are a few pictures I have managed to take in the last year below.
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| Snow is so fun! |
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| She's 4! |
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| We went downtown for Thanksgiving just as our own little family and stayed over night for the turning on of the lights last year. It was such a fun time and treasured memory. |
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| Cousins! We went to Ohio for Christmas and as usual, had a blast for family. |
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| Jonah turned six and celebrated in superhero style. |
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| Daddy-Daughter Dance |
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| We partied hard as Levi turned two in July. |
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| Our new backyard. Can you believe it? It's beautiful. |
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| Brian had shoulder surgery and Abby is "doctoring" his other arm here, just to make sure he's covered. |
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We had a family vacation to Kansas City and Lego Land. Levi found the only type of dog he would ever have the chance of getting. :) |
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| Doing the cake walk a Jonah's school carnival in August. |
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