The Latest and Greatest and not so Greatest

Levi had an appointment with Dr Q last Friday.  It went well, overall.  There haven't been any changes to his EEG, which is on the good side.  Dr Q feels like Levi is progressing better than 90 - 95 percent of most children with his condition.  This was very encouraging to hear.  And then came the "but".  Why is there always a "but"?  Until now I had thought that once we had his seizures under control and we had ruled out any known causes (which we did) that we could stop having so many appointments (every three to four months).  I thought we could only go uphill from here.  BUT, yes there's that word again, the problem is that as much as half of those diagnosed with infantile spasm will later present with a completely debilitating form of epilepsy that leaves the person with daily, uncontrolled seizures of all kinds and a high probability of severe mental handicap.  (cue my heart sinking to my stomach)

Dr Q said that Levi is not showing any signs for this syndrome, but that it can present anywhere from age 2 to age 6 and even beyond.  So, we have to watch him closely.

It seems that since he's doing so well, Dr Q feels very encouraged that we probably won't have to worry about it.  But, just that there's a chance is pretty scary, especially when I was just thinking there was no way it could get worse.  Honestly, that's what I've been hanging on to until now.  So, since it can get worse I'm just having to learn to trust God in an entirely new way.   I am trying to hope for the best and yet be prepared if the worst were to happen.  

One thing I know is that God spoke to my heart when all of this was first starting.  He told me, "Levi is going to be who I made him to be."  I have been clinging to that even more since I heard that it could possibly get so much worse.  I keep speaking Psalm 139 over him - that's the one about being "fearfully and wonderfully made".  Please, please be praying for my Levi.  Would you pray Psalm 139 over him?  Would you pray that the epilepsy would not progress to this way worse syndrome?  Would you pray for his complete healing?  Would you pray for peace and grace for his Mom and Dad, too?

On another note (pun intended as you'll see), I've had the perfect outlet to help me process all of this.  I've joined the annual 5in5 challenge with a bunch of musician friends all over the globe this year!  It's really cool. We all have to write five entirely new songs in five days (get the pun now?  note.... song?  Ha!)  Anyway, a couple of the songs that I've written have come straight from the emotions of the past year.  I hadn't written much music since everything happened with Levi.  I think it was a way of protecting myself, so it's been really good to get it all out.

Here's the links to the songs that I mentioned above:  I hope you enjoy them.

This song is from day 4 of 5in5:

https://soundcloud.com/kluntsford/picture

This song is from day 1 of 5in5:

https://soundcloud.com/kluntsford/dreams-2

Settling

I feel like I'm finally getting a grasp of the events of the past ten months.  Until now, life has been pretty surreal.  I think a huge part of it is that I haven't known what to expect or how to help. Is it autism?  Is the delay permanent?  If it is permanent, how severe will it be when he's older?  Will people be able to tell that he has problems?  How much will he struggle?  What will his strengths be?  

The questions are endless and we've had one of them answered - it's not autism - but, we don't know the answers to anything else.  Yet, somehow, I feel settled.  For the first time since that first week in the hospital, I feel like we have a plan of attack. We've got specialists coming out of our ears.  So far, we've got a special ed teacher coming twice a week.  A speech therapist joins the teacher once a week.  We're getting ready to start occupational therapy once a week and then sometime in the next few months we'll add another speech therapist twice a week.  We've got a DD (developmental delay) worker - a social worker who is helping us find even more services including some grant money to help us get some supplies that will keep Levi safe as well as some educational toys and games, etc....  We also have a social worker who is helping us find even more services.  She's currently seeking out yet another specialist to come and work with Levi.   Then there's a financial worker who is helping us find ways to help pay medical bills and the like.  Of course, I've mentioned Dr Q, the neurologist and Dr. Schultz, the developmental pediatrician.  And, finally, we will have some respite care - someone to come and watch and work with Levi while I catch up from all of the appointments and meetings and emails so I can have a chance to do things like laundry, grocery shopping, and yes, even taking a shower!

I've said it before, this is going to be a long road.  I might not know where that road is going to end, but I know we're doing EVERYTHING we can to help my Levi reach his full potential.  We're hoping and believing for a complete recovery, but until that happens I can be secure in knowing that Levi is going to be who God made him to be and I'm doing all that I can to see it happen.

Diagnosis Negative

So.....  Levi's autism screening was negative!  He does not have autism!  We went in for the testing and Levi had his best day ever.  He did things for the test that he had never done before.  The great thing is that he is continuing to do them!  This, we know, is due to the prayers of our friends and family.  Of course, we are very relieved that we won't have to deal with autism.  Autism, in general, doesn't go away.  A person can learn to handle it and work past it, but the struggle is still there.  Levi is still quite delayed developmentally and we still have an uphill battle, but, without autism, there might be more of a chance that he can completely catch up and eventually have no problems.  We don't know how high that chance is, but I believe it's higher than it would be with an autism diagnosis.  Of course, if he is able to catch up, it will take time, probably years, but he won't have many of the social struggles that come with autism.  And, that, right now, is good enough for me!

The other good news is that Minnesota is one of the top states for the services it offers to children with disabilities.  We already have a teacher come in twice a week and now a speech therapist is going to join her once a week.  But, we're going to be able to get many more therapies and services to help him out.  The earlier he gets these interventions the better.  It won't be easy, and we're not guaranteed that he'll ever fully catch up, but he has a much greater chance with these services.  So, for his sake, we're doing it all.  Whatever we qualify for, we're doing it.  Thank you Minnesota!  Most of all, thank you Jesus!  My baby boy is going to be who You want him to be no matter what happens.

Roller Coaster

Well, alot has happened since my last post.  We've had another appointment with the neurologist, Dr. Q as well as one with the developmental pediatrician, Dr. Schultz.  We were so excited that Levi's EEG in October showed less potential for seizures and that his language was increasing.  But, unfortunately, the most recent appointments have stifled our excitement.  Levi had another EEG a few weeks ago and this time it showed potential for full blown tonic-clonic (grand mal) seizures (which it hasn't shown in the past).  It also showed that the slowing on his brain has returned.  Dr. Q was concerned about this.  He said that instead of waiting six months till his next EEG, like we had anticipated, he'll need another one in two to three months.  He also said that if it still shows slowing on Levi's brain, he'll need to have another MRI to make sure they didn't miss any problems on the original MRI.  Boo.
A couple of weeks later we had his developmental appointment.  Like I said before, Levi had grown so much in language that I was certain Dr. Schultz would excuse any previous thoughts of autism.  Unfortunately, his improvement in language didn't carry over into his communication skills.  In other words, he has more words than he used to, but he's not able to use those words to consistently communicate thoughts or even his basic needs.  Soooooooooo, this past week we made the trek back to Rochester for the third time in a month for the official autism screening.  We have to go back this Friday to discuss the results with Dr. Schultz.  I'll keep you posted.

On another note, we spent an evening in the ER this week because Levi was having seizures due to a high fever.  It's the first time he's had any seizures since his initial hospitalization.  The really bad part is that it was the spasm seizures.  I mentioned, in my last post, that if Levi continued to be seizure free, especially spasm free, Dr. Q might be willing to switch to a milder medication.  And, at his appointment a few weeks ago, that was confirmed.  But because of his seizures this week, now, instead of switching to a milder medication, we have to increase a medication that could be making his developmental issues worse.  Again, Boo.

This was a very technical post, not well written, but it's helping me process all the ups and downs of this roller coaster ride.  I'm trying to find that balance between hope for miraculous healing and faith that God might want to use this challenge to form our family into what He wants.  So, for now, I'm just processing....

The one thing that I don't have to process, though, is that God gave me this beautiful boy just the way he is - joyful, playful, silly, and oh so affectionate!  Levi is going to be who God made him to be and nothing can get in the way of that.  Nothing can.  No label, no diagnosis, no prognosis is going to change who he is.  And, I'm hanging on to that truth with every fiber of my being.

Development

So, in my last post I mentioned that exciting things are happening in regards to Levi's development.  Over Christmas break he started doing and saying things he has never done or said before! He started mimicking words regularly (something he did very infrequently before).  He started making animal sounds at the appropriate animals without being prompted to do so (he would rarely do it when he was prompted and only for a couple of animals).  Now he knows several animal sounds!  He started pretending to eat toy food and talk on phones.  This is a huge step as he had never pretended before.  He has also starting bringing us toys and books to play and read with him.  Again, this is something he's never really done.  These things might seem simple to most people, but they are things he should have been doing six to twelve months ago.  So, to see growth like this so quickly is very encouraging!  We are quite encouraged by this development and are hoping to see him continue at this rate.

The main thing to keep praying for is that he is still inconsistent in all of this.  This could be caused by his yucky seizure meds, but the developmental specialist said it could also be a sign of autism.  She said he is not on the autism spectrum at this point, but that if he continues to be inconsistent in his attention and his performance that we may have to reevaluate.  Before we do that, though, she wants to try to get him off of his current seizure medication and onto something that doesn't cause developmental problems like this one does.  The ONLY reason he's on it, at this point, is because his seizures were doing more damage than the medicine could do and the regular seizure meds weren't stopping the seizures.  But, since they've been stopped for awhile, we'll be talking with Dr. Q about when we can make some changes.  He's the ultimate deciding factor for that. But, once we do change his meds we'll be able to tell what is causing his inconsistency.  Please pray that it's the medication and that we can switch to something new soon!!

We have another appointment with Dr Q as well as another EEG in a couple of weeks so I'll have more to share soon.

Catching UP

WOW!! It's been two months since my last blog post!  I've got some serious catching up to do.  So, I'm going to cut to the chase.


November, as you may have noticed by the hideous redecoration of my blog site, was National Epilepsy Awareness Month.  I successfully posted about epilepsy two or three times and then got sucked in to the craziness of the holidays.  Making homemade stockings and hand warmers for my entire family ended up taking my every spare moment.

I also spent A LOT of time in the doctor's office waiting room - twice a week for four out of six weeks (all of Nov and the first two weeks of Dec), and once a week the other two of those six weeks.  It was a little crazy.  But, things are slowing down now so I've been able to have some chill time over the past week or so.

On to the Levi front.   Of course a goodly portion of waiting room time was for him, but I'm happy to say that his appointments are going to be spreading out a bit.  Hooray!  I will, though, share the results with you because that's what I do here :)

The big appointment that we had with Levi was toward the end of November.  We met with a developmental pediatrician who, you guessed it, assessed his development.  She asked me a million and two questions and observed him while he played and played with him and talked to him, etc.... etc.... etc....  In the end, she said what I already knew.  At 23 months old he was assessed at a fourteen to sixteen month level for play and physical coordination, but at a twelve to thirteen month level for language.  Like I said, this wasn't a huge surprise to me considering my previous post about Jack.  It was disappointing, though, to hear it as an official assessment.

Do you remember that one time in one of my previous posts that I cracked that one funny joke about how if Levi is six months behind now then when he's thirty people aren't going to get on to him for acting like he's twenty-nine and a half so I have nothing to worry about?  Well....., apparently that's not quite how it works.  Instead of months behind, it's percentage behind.  So, according to the doctor, he's behind by about thirty percent.  So, if he's behind by thirty percent at the age of thirty,.... well..... you can do the math.  So, that was disappointing as well.  But, she did say that children who start out on track, like Levi did, and then have some kind of event or medical situation that causes the developmental delay, like Levi did, have a better chance of gaining ground back.  She just didn't want to get my hopes up, because it is also likely for someone in his situation to remain delayed.

So, I was rather disappointed and have really struggled with it, especially for the first few weeks.   It's not easy to realize that your vision for your life, and your child's life, might not be even close to what you expected and dreamed.  So, I've had to let go of some dreams and ideals that I never thought I'd have to let go of.  It's been hard, but, amazingly, it's been liberating.  I'm reminded, again, of God's sovereignty.  I'm not in control of anything and the reality is that no matter how well life goes, things aren't going to go quite how I expect them to.  And, the more I can let go of my dreams and just let God have His way, the more I'll be able to handle it and even embrace it and be content and happy when things don't go my way.  I'm not saying I'm giving up hope for a complete recovery.  On the contrary, I know Levi will have a complete recovery.  I just don't know exactly what that will look like.  And I'm becoming more and more okay with that every day.


Now, since Levi had that last appointment there have been some pretty exciting developments in his development (ha.  developments in his development. I'm funny.) But, that's for another post.  This one's getting too long.

To Be Continued..........

How To Help A Seizure Victim

Being new to the epilepsy world, I don't know if the word victim, in reference to someone having a seizure, is politically correct.  But, it's really the only way I know how to word it at this point.  And, for those of you who know me, I'm not all that concerned with being politically correct anyway.

My last post gave lots of information about the different kinds of seizures and I promised to follow up with information on how to help somebody who is actually having a seizure.  So, I'm going to restate the ways a seizure can present itself and then give ways to help after each one.


1.  Loss of Awareness/Consciousness (focal seizure) - A person suddenly interrupts an activity and stares blankly.  This may or may not be accompanied with fidgeting, like playing with fingers or buttons or lip smacking or chewing.  This can also cause strange sensations like smells or tastes.

If you come across somebody who is having a focal seizure just stay with them until they regain consciousness.  Time the seizure for them so they know approximately how long it lasted.  Once they regain consciousness ask them basic questions regarding their name, the date, etc....   Ask them if there's anybody you can call to sit with them if they need time to recover.  Stay with them until you know they are fully recovered as these seizures can sometimes be followed by tonic clonic seizures.

2.  Partial Body Convulsions/Involuntary Movement - Only part or one side of the body convulses or jerks, often rhythmically.  Sometimes people may collapse due to the kind of movement caused by the seizure.

Again, stay with them.  Time the seizure.  They may or may not know what's going on.  If they are unable to respond to you and the seizure has lasted more than a few minutes, it may be necessary to call for an ambulance as emergency medication might be necessary.  (I'm not as familiar with this kind of seizure, but it's always better to be safe than sorry.)  Once the seizure ends, stay with them until you are reassured that they have received the help they need.

3. Full Body Convulsions/Involuntary Movment - The entire body is convulsing or jerking.  The most obvious kind being Tonic Clonic (Grand Mal), which is a constant convulsion of the entire body. 

If a person presents with a full body, constant convulsion type of seizure, they will be completely unconscious and unable to respond.  First, clear the area, where they are laying, of any objects that they could bump into and cause injury.  Then, if possible, turn them to their left side and tip their chin down just slightly (as in CPR) to open up the airway.  Keep a hand on them and speak calmly to them.  Reassure them that they will be okay. And, in the mean time, time the seizure and call for emergency assistance if it lasts more than a few minutes.  If these seizures last too long, they could cause brain damage due to a lack of oxygen to the brain.  Stay with them until somebody they know is there to help.  This kind of seizure will often cause muscle pain and weakness as well as extreme fatigue once it's finished, so they will need assistance.  One other thing that everybody should know about tonic clonic seizures or any seizure for that matter.  People CANNOT swallow their tongue if they're seizing.  DO NOT EVER put any object in their mouth to hold their tongue down.  It could seriously injure or even kill them.  Like everybody else, they need their mouth clear of objects so they can breathe.


So, there you have it - the basics to handling a seizure.  Please know that I am not a physician and that I am new to the world of epilepsy and seizures.  This is the basics as I understand it.  I'm sure that when it comes to describing the types of seizures I've given some inaccurate information.  But, like I said, we really just need to know how to respond and I just told you everything the hospital told me so I should be good on that side of things.  The important thing is to be there for the person, help keep them safe, time the seizure and call for medical help if necessary.  And again, don't put anything in their mouth.  EVER.