Dada!!!

A very big day in our house!  For the first time in probably 6 months, Levi can say "dada"!!  He doesn't use it on his own yet and needs some prompting, but he can say it!  Right after we left speech therapy, Levi and I met Brian and Abby at Costco and had to show it off. You can't see it on the video, but dada is beaming. :) (P.S. Levi is a bit distracted as he's sitting on a super awesome jeep scooter as he's talking)

Connections

For those who are friends with me on Facebook, you may have heard that we were able to Levi evaluated at the Cleveland Clinic last week by a Pediatric Neurologist. There is a story funny story behind all of this that I didn't put on Facebook, but I think it is entertaining enough to share.

At the Pediatric Neurologist, playing with daddy's
old Transformers

Within the FCA network, Brian has gone to many Bible Studies over the years. When we lived in Lincoln, one he regularly went to one on Friday mornings at a diner in town and we lovingly referred to this study as the "Old Man" Bible Study. It is a bunch of guys, all over the age of 70 who order oatmeal with bugs (that's oatmeal with raisins in diner talk) and chat. One of the frequent attenders of this early morning study is Tom Osborne. Well, a few weeks ago, Brian's boss was at the Old Man Bible Study and mentioned Levi in a prayer request, sharing about what's going on and his January appointment with the Pediatric Neurologist. Apparently Coach Osborne felt compassion for how far off this appointment was and offered to help and see if he could get it moved up.  A couple of weeks went by until last Monday, while in we were in Ohio, Brian spoke with a regent of UNL who had been asked by Coach Osborne to help us out. He contacted a Vice Chancellor at UNMC in Omaha, and before we knew it, Levi had an appointment the next day (last Tuesday) with a Neurologist. Well, this was amazing, but we were in Ohio for Thanksgiving. Bummer. Brian mentioned that we were close to Cleveland Clinic (ranked #3 in the nation for Pediatric Neurology) and they said that if we were able to get in there, to go ahead.  So, last Tuesday morning I made a phone call to the Cleveland Clinic and lo and behold Levi was able to get in that afternoon.  Before we knew it, Brian, Levi and I were off to Cleveland with Jonah and Abby staying to hang out with Papa and Mimi.

Driving through Amish country.

The appointment itself went well. Levi cooperated for his part, but mainly we talked about what's been going on with him and his history. The Dr.'s opinion is that Levi has one of three things going on: 1) Something called Landau-Kleffner Syndrome, a seizure based condition that damages the language part of the brain, if I understand correctly  2) Autism  3) Apraxia by itself and we just won't know what's causing it. To rule out Landau-Kleffner, she wanted him to have an EEG and we were able to get it scheduled for the next day.

The EEG was an experience and overall it went well, but I'd rather not ever do it again. They swaddled Levi up in a blanket and wrapped taped around him so he couldn't grab the wires while she put them on. She first measured his head and marked where the electrodes needed to go and then glued on and blow dried the glue of all 20 electrodes. The whole process probably took 20-30 minutes. He hated it, fought and cried for probably half of it, but the blessing in that was that he was so worn out from the process that he fell right asleep on cue two minutes into the test.  Thank you for praying!! He slept for a bit, then she had him woken up, flashed a strobe light in his eyes, and had me hold his eyelids shut for a few seconds. The test itself was 23 minutes I believe. Thankfully, they were able to get a very good reading and all went well on that end. After that, she used a type of fingernail polish remover with oil to dissolve the glue and get the electrodes off and then washed his head. We were glad to be done.

Post EEG. We were all glad to be done!

Later that night, after we were back at Brian's parents, the Neurologist called to say "His EEG came back normal. OK? Thank you. Goodbye." Not exactly Mrs. Information for me, but I was glad everything was OK and we could rule out Landau-Kleffner. While most people agree Autism is very unlikely, we are mostly likely going to do a type of Autism testing that she recommended called ADOS to get a better picture of what's going on.  I spoke to the people at Munroe-Meyer about it today and hopefully should get more information regarding it this week.  Today I also had a woman at Munroe-Meyer (not sure of her title, but she observed Levi) suggest that we may want to have genetic testing done as well as an MRI. Hoping to get this Developmental Pediatrician appointment moved up so we can knock out some of this other tests and unknowns!  So, the road continues, but we are thankful to have gotten one Dr. appointment and test out of the way. Levi is charming people all along the way though! Everywhere we go they are all talking about what a cutie he is. And they're right.

Unequipped

    Having a son suspected to have a rare neurological disorder puts you into a sort of research frenzy. While I definitely believe you can have too much information, I would much rather be over informed that naive when it comes to my kids. Over the last few months, I have Googled anything that I can think of in relation to what's going on with Levi. While overall it has been very helpful and I'm glad to have more information, it also left me with a sense of helplessness.  I so badly want to help Levi and give him everything that he needs to begin this path to speaking, but I am left feeling so very unequipped. I don't know the first thing about neurology, speech therapy, developmental disorders, let alone how to treat things within these fields.  A huge part of Apraxia is getting lots and lots of therapy, which we are now doing four times a week, but to keep the process moving along, much reinforcement needs to be done at home.

     Apraxia is very one step forward, two steps back.  In therapy sessions, Levi will play for a minute or two, and then the timer goes off and its work time. He needs to repeat five sounds for the therapist and then he can go back to playing. This time is so encouraging, but also sobering. Levi will try and try to repeat these sounds.... Baa for example. Levi can say /b/ and /a/, but putting them together is a challenge and does not come naturally. His work time goes like this: he gets prompted to make the /ba/ combo and maybe after five attempts succeeds. He then can repeat it a second time perhaps immediately. Yes, progress!  Maybe he's getting it?!  So, he goes and plays, the timer goes off, and he's in the chair again. And we go back to /ba/.  With no luck. He will look at the therapist, study his lips, make an attempt, and just cannot do it. Frustration sets in, Levi starts squirming and trying to leave the chair, and we go back to trying to get the /b/ sound out of him again and wait to try /ba/ another day. One step forward, then quickly it's gone.

     On Monday I asked the therapist if this is normal, and he assured me that with motor planning disorders such as Levi's, it is. It's a long road. One that is best done with 95% of the work done at home. He gave me pointers on what to do to get in some more repetition with Levi without wearing him out, but I still was left feeling entirely unequipped. I want to figure out what's best for him, do what's best for him, and provide the best environment for him to thrive in, yet I can barely get through a day keeping three kids in line, scrubbing my toilets, helping my husband, putting three meals on the table, making sure homework's done and kids are at practice on time, etc. etc. etc. Unequipped. I am just one woman, and my first name isn't Wonder. And as this word unequipped kept popping into my head, thankfully a verse that had been planted there long before popped in after it. "All Scripture is breathed out by God and profitable for teaching, for reproof, for correction, and for training in righteousness, that the man of God may be complete, equipped for every good work." 2 Timothy 3:16-17.

Levi, one week old.

      I am equipped!  Through Christ, the Bible, and the Holy Spirit, God has provided everything that I need to handle what he has put before me. Alone, no I cannot handle this all... not even close! But my faith in God allows me to trust that his word is true and his word tells me that I am equipped for every good work. Not just the works that I expected to have in my life, laundry, meals, cleaning, childcare, but every good work, including speech therapy, neurologist in training, and toddler mind reading (thankfully toddler boy minds mainly involve food, sleep, and trucks). So, I was and am encouraged. No, my dumb mind alone, cannot handle this, but God intercedes, giving me the strength and wisdom to do the good that he would have me do. And that's amazing.

     I was also encouraged this week as a was reminded that God gives grace to the humble (James 4:6). That doesn't mean he gives out grace on those who don't think they need it. He gives it out, yes, but when we see that we cannot do it on our own! And what a great place that is to be. I cannot handle this on my own! Overwhelmed, for sure, but what does that feeling make me do, but turn to my Savior who gladly takes my burden.  The all-knowing, all-loving, all-powerful God takes my burden in his perfect care. I have no reason to worry! And I receive grace. Wow, do I praise God for that. So, I am thankful. Not for my circumstances, but for where they bring me, which is at the throne of God, humble, knowing that I cannot handle this, but that he has and will.

The Learning Curve

Yesterday, I was asking the Speech Pathologist at Munroe Meyer what I should communicate to the school district regarding a plan for Levi moving forward. He told me to hang on a minute and returned to the room with a few pages describing the technique he is using to try and get Levi talking. When I came home and had a moment to look at it, this was written at the top:

"In the initial stages of assessment, diagnosis and intervention, the parents of and others close to children with Childhood Apraxia of Speech (CAS) or suspected CAS (sCAS) are embarking on a huge learning curve. Parents may feel 'swamped' with information from SLPs/SLTs and from other sources – some reliable, and some not-so-reliable. It is a time for hard work for parents as they keep the child busy with focused, relevant, enjoyable activities that work from the child’s strengths and interests."

Oh man, did that describe how I have been feeling. The word overwhelmed has come out a lot as people ask how things are going for us, but the above paragraph is a better explanation. The article he gave me was a description on how to work with "non-verbal" kids with "very severe" Apraxia. Gulp. Although it still has not been officially diagnosed, he also used that word in describing Levi in our appointment. I suppose either way, it's the closest suspicion of what is going on.  Also, in his speech therapy appointment with the school district today, the therapist told me that she notices that Levi can very obviously hear, but that he often makes sounds reminiscent of a deaf child. He bunches his tongue up in the back as a deaf child would. I told her it was interesting she said that, because I had heard a few kids on Youtube with Apraxia that were a bit older than Levi and I had made the same comment to Brian, that you could understand them, but they spoke as if they had some kind of deafness.

It has finally settled in that life has and is going to change largely for us, particularly Levi and I. This is certainly not the way I every could have imagined this year going for us, not to stay I am devastated by losing my plans for this year. It is more an adjustment to something so foreign and unexpected. I told Brian the other night that it feels like we woke up one morning and discovered that our child had suffered a stroke. Levi hasn't, but Apraxia is a common side effect of a stroke and I do feel that although it is most likely something he was born with, it has come on us all of a sudden. He is having to learn to talk, not again, but for the first time. We have speech therapy appointments four times a week now with possible Occupational Therapy being added to the list (he is getting evaluated on the 16th). I am definitely viewing our world and the future differently for us as well. We are going to put a picture board in the kitchen where he can grab a picture of the food he wants instead of hanging on the fridge or grabbing what is in reach in the cupboard. I am uneasy about leaving him in the short and long term future, as I am and will for a long time be his translator. So, yes, there is a learning curve and I feel like we will be moving down on that curve until we can start our approach back up. Once we make it through the OT evaluation and the Neurology appointment, perhaps I will feel like we are on the upswing.

A lot of you have asked me if Levi will ever learn to speak.  The answer is most likely yes!  While he is very behind and it will take years of work, it is very likely that he will speak and speak clearly enough to be understood.  So that is a huge hope that we have every reason to believe is possible.

OK, well this has maybe been a little depressing (sorry!!), so I will end with another funny story.  At the Munroe Meyer Institute the speech department is on the third floor, so every time we go we get to walk through three automatic doors, down a hall, turn a corner, and on an elevator. All along the way Levi is hitting every automatic button in sight and for those of you who know Levi, he does so excitedly. :) Well, when we were waiting on the elevator and going up to the third floor, as soon as the door opened Levi yelled an excited "Ahh!" and started sprinting off the elevator. A poor janitor was standing on the other side of the door with his cart and screamed a bit at this bursting ball of energy that was running by him. Thankfully, he started to laugh and it was pretty funny seeing Levi freak him out. He said he just wasn't expecting that to happen when the doors opened. Who would be? Anyway, I thought that was pretty funny. I need to try and get Levi to tone it down a bit on the elevator I guess.

Showing Off

Here's Levi showing off some of his new sounds. I think being giggly is half of his problem. ;)

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.

Levi, holding his sucker, waiting to see Paul,
and feeling like he's big stuff.

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.

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.