Friday, December 28, 2012

Update - Surgery has been scheduled!

Your prayers are working already!  God was merciful and allowed me to get in and see a doctor yesterday! They said that openings never come up like that, so I am so thankful.  The doctor essentially gathered more information and confirmed what we already had suspected. After doing an ultrasound, he confirmed it appears to be "classic" Pleomorphic Adenoma. He said he would be surprised if it was cancerous, based on looking at the shape of it, but he took three needle aspirations (samples) of the tumor and I will hear the test results of that either late this afternoon or tomorrow. Please be praying that it isn't cancer. That would be "a whole new ballgame" according to the doctor in how aggressive he is in surgery and the treatment afterwards.  Some good news is that as long as it isn't cancer, he doesn't do radiation, so that's a relief.  Also, he won't know until he's in there and sees things how the surgery will impact my nerves and which areas of my face and the side of my head, but he did say that I will have a numb ear lobe the rest of my life as well as numbness possibly around that area as well.  I also will have temporary numbness in many areas because he was messing with the nerves. He actually said that helps the recovery to be less painful.

In the last week, I have also had a lesion appear on the roof of my mouth towards the back, essentially out of no where. He looked at that and said he would like to keep an eye on it. Depending on how it looks next week, he may remove it for surgery.

Surgery has been scheduled for next Friday!  I'm so thankful it will be soon!  Ready to get this thing out. I was actually in a decent amount of pain last night and am still sore just from him taking the samples, so I'm even more eager to get it removed. In the meantime, to prepare for surgery I need to go and have a pre-operation physical done on Monday, coordinate speech therapy adjustments for Levi while I'm out of commission, and finish up some work for my brother's companies' convention that I had been planning and am no longer able to attend.  Also, one of my other brothers is coming over this morning to frame a drywall a guest bedroom in our basement. Brian's parents are going to come for a while during this whole ordeal, and we're cheaply able to make them a guest room, so that's great.

OK, well that's it for now. Please continue praying if you think about it. Just one week away!

Thursday, December 27, 2012

Taking the Good and the Bad

Forgive me if this post is a little disjointed, but I wanted to give an update on Levi and also share some bad news about me (Jenny). It's been a crazy week full off information and I don't want to get too far behind so I wanted to post, but I'm also a little flustered by it all and having trouble thinking clearly.

Levi - Good News!
Yesterday was our long awaited appointment with the Developmental Pediatrician for Levi and the appointment went very well. I'm not going to go into too much detail, but he did a very thorough evaluation of Levi and his conclusion is that Levi is on target and at an appropriate age cognitively and physically in pretty much every way. He had no concerns in those areas. Verbally, Levi is at a 9-10 month level. Verbally he is very weak, but he has much more language in there than he is able to express and be understood on. So, he essentially said Levi has isolated Severe Apraxia. At this time he thinks that any MRI testing, genetic testing, etc. would be overkill and not give us any information. Apraxia is very hard to understand and we don't know as much as we'd like about it, but it appears to be an isolated condition in Levi, which is a huge sigh of relief. That being said, he did say it is a hard diagnosis to have because it is a long, slow moving road and for us to prepare for lots of work ahead of us. We should keep doing what we've been doing and one comfort is that he told me to focus on encouraging communication from Levi in any from. Leave the speech therapy to the professionals and just really encourage Levi to keep in touch with communicating with the outside world. That sounds much less daunting to me than what I had thought I needed to be doing, so that is a relief. I asked the long term expectations for Levi, as an Apraxic person, and he said that it really widely varies. He expects Levi will be able to attend school, but will most likely need some type of augmentative device (think ipad) to help him communicate and be understood. He also said that it takes about 100-200 sessions of speech therapy before most Apraxic kids see any improvement, so to not be discouraged that it is very slow going. So, we are to keep doing intensive speech therapy with him, four sessions a week, indefinitely, and encourage him to communicate while not expecting him to speak when he can't. This all came as very good news to us and a relief. Praise God there is nothing more going on with him!  Oh, and the Dr., whom we were very happy with, said Levi will wear you out, but is very fun to be with. We thought that was a great, accurate description of him. :) 

Me - Not so great news....
Flying home from Ohio, I felt a lump in front of my ear on the plane while my ears were popping. I went to the Dr. that Monday and was told it was a swollen lymph node and it would go away within a month. If not, come back. Three weeks later, I went back to get antibiotics to spur things along since it hadn't changed. After finishing the antibiotic and seeing no change, I asked to be referred to an ENT. Last Friday, I went to the ENT who said he guessed it was a swollen lymph node, but it could also be a growth. Either way, it needed removal, but he wanted me to get a CT Scan to get an idea of what exactly was going on and the location. If it was a growth, as long as it wasn't in my parotid gland, a salivary gland, it would be a relatively easy removal. I immediately went to get the CT Scan and then Monday, Christmas Eve, we got the results that I did indeed have a tumor and unfortunately it is located in my parotid gland, which means major surgery. Wednesday, when offices reopened, an appointment was made for me at the Estabrook Cancer Center for next Thursday so I can meet with Head and Neck surgeons that are able to perform this type of surgery. Essentially the make a 6 inch incision in front of my ear and down my neck and then it's a 6-8+ hour surgery to remove the tumor. It takes a long time to remove it as that is the nerve center for your face and damaged nerves means facial paralysis. I don't know exactly when the surgery will be, but I'm guessing in about three weeks and I'm not sure how long I'll be in the hospital, but perhaps a couple of days. Recovery takes about 2-3 weeks and sometimes they do radiation to follow up, regardless if the tumor is benign or malignant, in order to kill of any remaining tumor that they were unable to get because it was wrapped around nerves.  There is an 80% chance that it is not cancerous, but we won't know most likely for sure until after the surgery.  For those who like to google what's going on, it's most likely something called Pleomorphic Adenoma, but if you google Parotid Gland Tumor it will give you an idea of the surgery. We feel very blind sided by this whole thing and are just sort of rolling with the punches at this point. Although we were are in shock, we know that we can handle it and perhaps will come out better people because of it. I read this scripture yesterday and was comforted:

"So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal." 2 Corinthians 4:16-18

We have been through some trials lately as a family, but those verses really sum up our hope. We are being prepared for an "eternal weight of glory beyond all comparison". That doesn't sound too bad, does it? :)  Working on not focusing on the seen, but the unseen, and praising God for it even when the seen is particularly discouraging.

Please pray for us if you think of it. It is a long wait until next Thursday and then the surgery beyond that seems far as I am so very eager to just get this over with. Also, pray that the tumor would not grow or worsen over that time and that radiation would not be necessary. And that the Dr. would have a steady hand and that I wouldn't have any permanent paralysis or damage from the surgery. Thank you! Love to you all! 


Tuesday, December 11, 2012

Recently...

Here are some pictures from my phone of the last month or so of life...

Our babysitter during our small group? Cars 2. 
Abby doing her best to be 15.
Speaking of which, here she is in Justice for Girls picking out her birthday and Christmas gift ideas to send to Aunt Dana.


Apparently Jonah took this picture at dinner. Levi was mostly likely running laps around the table.

Getting ready to take off to see Papa, Mimi, Uncle Mark, Aunt Steph and the cousins!
The boys deep in a game of football
Buddies
I love Levi looking at Toby in this one. 
Can't wait to meet you Elliott!
Goofs!
Heading home.
Little ducks all in a row. This kids having become travelling pros when it comes to going to Ohio.
Christmas shopping! And Brian doing an extremely awkward pose....
Levi saw this at Toys R Us and was smitten. A gift for the yuppy toddler.
Bath time. On the brink of disaster.
We went to a "German" Christmas market and could not get enough of these roasted almonds! We loved the Christmas markets in Germany! Someday we will have to go back.
Love these two.
Abby on her fifth birthday, wearing her new birthday dress from Papa and Mimi. Couldn't be happier.
Party time at her pick, the Amazing Pizza Machine with her two bffs.
Frog Hopper!  A crowd favorite, Levi's in particular.

Sweet girls!
Making sugar cookies. Yes, there are a few Star Wars cutters in there.
Even the camels couldn't keep Levi awake through the Westside Christmas Pageant.
Showing off his "look mom, I can hold the ball with no hands!" skillz.  He doesn't have to say it. His look tells it all. :)

Friday, November 30, 2012

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)


Monday, November 26, 2012

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.

Thursday, November 15, 2012

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.

Tuesday, November 6, 2012

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.


Tuesday, October 30, 2012

Showing Off

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

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.

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.

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".

Levi feeling pretty awesome in his new pants.
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!

Tuesday, October 16, 2012

Catching Up

Well, it has been a long time since I have blogged, but it has not been without reasons. First of all, I have three young kids. Get off my back. Second of all, the end of 2011 and certainly 2012 thus far have brought many, many changes. So far this year, we have sold our home, lived at my parents for 2 1/2 months in the interim, then moved into our new home. We have changed churches, leaving our former church to help plant a new church in the Gretna area. This was also the reason for our move. (More info on the church here if you're interested). We have also changed schools, which was thankfully an easy transition.  All of these changes have drastically changed life as we knew it, but all have been exciting and positive. So, it's been a busy, busy time, but also very exciting.

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.

Snow is so fun!
She's 4!
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.
Cousins! We went to Ohio for Christmas and as usual, had a blast for family.
Jonah turned six and celebrated in superhero style.
Daddy-Daughter Dance
We partied hard as Levi turned two in July.
Our new backyard. Can you believe it? It's beautiful.
Brian had shoulder surgery and Abby is "doctoring" his other arm here, just to make sure he's covered.
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. :)



Doing the cake walk a Jonah's school carnival in August.