My Precious Boy

Just wanted to give you all a quick update on Caleb.  He is doing better and better every day! He is keeping down his food and has also continued to gain weight. (we are up past 18.5 lbs now) He has physical therapy every week and the last 2 weeks the PT has noticed him getting stronger.  He is sitting better and standing more balanced as well.  I didn't used to be able to carry him on my hip very well because he was so unstable, his core muscles weren't strong enough to hold him up.  But now it's no problem at all.

Today was the best day yet, he actually wanted me to put him down so he could stand at the coffee table and play with his "Ra ra."  (Translation- Elephant.  yes I know, makes no sense! haha) Anyway, he would bend down and put it on the lower shelf of the table and then stand back up.  (he needed help getting it back from the shelf but no matter) He has also been crawling more lately, and today especially.  He stands at his tool bench and plays, crawls over to the garden and checks the mail, (his favorite) and tonight he was even crawling around chasing a balloon.  For those that haven't seen him all of these things are such a huge improvement over where he has been the last few months.  It was not all that long ago that he pretty much just sat in a chair most of the day watching TV and even that was too exhausting so he would roll out of the chair so he could just lay on the floor and watch TV.

Our appointment for his consultation for the muscle biopsy is next Monday the 21st.  We are hoping to have the procedure done the beginning of December.  With all of his drastic improvements lately I really want to get him started on his vitamins to see what those do for him as well.  (we have to wait until after the muscle biopsy to start the vitamins as they could interfere with the results)

As far as why the improvements over the last month or so, well, God is really the only answer I have. (and it's really the only answer I need!)  Caleb was throwing up multiple times a week for over 4 months, and then one day he woke up and hasn't thrown up since.  (that was over 2 months ago) He had declined to where he was not able to sit up and had no desire to stand or crawl.  He didn't really want to eat much, and it was the same few things if he did eat.

Now let me be really vulnerable here, I have read that with this disease there can be times where they get better and times when they get worse.  I'm standing in faith that he will not get worse but only continue to get better.  But sometimes I am scared to hope that he will continue to improve.  I am scared to tell people that he is doing so well because what if tomorrow he isn't?  It's in those moments that I stop myself and I praise God for today.  I thank God that today my son is feeling so good and is physically stronger than he was yesterday.  I thank God for his charming personality and adorable little face.  His smile brightens up the room and you can't help but smile back.  He is such an amazing little kid and I have such hope for him.

Please continue the prayers, they are working!! :) Thank you all for your love and support as we walk through the trials of this life.

Love,

One day at a time

Over the last couple of weeks Caleb has been making some great progress! He has been gaining weight (a big deal seeing as he hadn't gained any weight for about 4 months) he put on half a pound in the last 10 days!! He is over 18 pounds now. (18 months old) he has put on 3 pounds in just the last 2 1/2 months! The Dr was very serious about him gaining weight and told us he has to be eating or he would have to have a feeding tube. Caleb is still finicky sometimes, but he is eating way more than he used to and not throwing up, like at all! He has only thrown up twice in the last 2 months and it was not near like the crazy episodes he had for so many months. We are so amazingly thankful!!
Tonight he was also sitting better than he has in a long, long time! He was even using his hands while he was sitting and didn't need them for support. So great!
I don't think it's any coincidence that everything seemed to really start going uphill very quickly after he was prayed for by family, church, and friends. Thank you to everyone who has been praying for our precious little guy. We have heard from lots of different people that "God's got this." How that plays out we are not sure but we know that we are not alone, and God has a plan and purpose.
So we will keep believing for miracles in our little boy's body, and celebrating the improvements we can see.

Love,
Jessica

A Hard Day

Opening a care package from Gateway                        Riding his Harley

                                                                                                                   A "few" weeks ago :)

Thank you to everyone who commented and who have expressed their love and prayers.  We are so blessed to have such wonderful family and friends to support us on this journey. I know some of you have looked up Mito and Leigh's Syndrome.  If you found any of the things that we did they were anything but promising.  Most of the kids have lots of tubes coming out of their body, some have full time nurses, most don't leave the house, and some sites say patients only have months to a year to live.  However, that is not the case with our Sweet Caleb.  (and I'm believing that will never be the case!) We still don't know so many things, but I do know that today Caleb doesn't have any tubes, we haven't been worried about whether he will wake up tomorrow, and so many things that parents of kids with Leigh's worry about.


But that doesn't mean we don't have our own struggles.  Today was a rough day for me.  Caleb has actually had a pretty good day,and a really good week.  (besides having a little cold, however it has only been a small cough so we are thankful for that) He has had an appetite and has been motivated to play.  A few weeks ago he just sat in his chair and watched TV and then when that got to be too much he would lay on the floor and watch TV.  Someone asked me if the Mito makes him tired all the time or if he sleeps a lot.  He isn't necessarily sleepy all the time, more just physically worn out.  Even if he hasn't done anything.  His cells don't make the energy needed to function properly and so far that is most evident in his muscles.  He doesn't walk and at this point is a long way from walking.  That is not really something we are even that concerned about at this point.  


Anyway, I was playing with the kids on the floor and I started thinking about 8 weeks ago and what Caleb's energy level looked like.  He was pulling up more and crawling around more.  Then he was rolling a truck around but had to lay down to do it, he just didn't have the energy to sit up.  It makes me sad for my little boy that he can't do the things that other 18 month olds can do.  He can't stand up and look through a toy chest without getting tired and sitting down.  He can't sit up straight and play with his toys.  He can't run around outside like he wants to so bad.  He can't ride his tricycle around and chase his sister.  


I try to take each day for what it is and enjoy it with my precious gifts, but some days are just harder than others.

A Partial Diagnosis for Caleb

I've been wanting/procrastinating on writing this post. I want to keep everyone in the loop but am struggling with how to put it all in words.

Caleb had his MRI a little over 3 weeks ago. I got a call from the neurologist the next week with the results. He said there were little parts of Caleb's brain that had died and this information coupled with some of the blood work confirmed that he has a Mitochondrial Disease. (Mito for short) The Dr had already contacted a specialist at Children's Medical Center and had an appointment set up for the next week if we could make it.

So this past Friday we went to see Dr. Pascual. The following is an email I sent out to some people later that night.

Well we had Caleb's appointment this morning. The Dr was amazing, one of the leading physicians in the country if not the world for Mitochodrial Disorders. He had done his homework and knew all about Caleb and his history without us telling him anything.


He diagnosed him with Leigh's Syndrome. (feel free to google it if you would like more info. The UMDF website is a good place to start) The Syndrome explains Caleb's issues over the last months, the eyes, feet, vomiting, weak muscle tone, low energy, not walking. The Mito is the cause of the syndrome. (different Mito diseases manifest in different ways) There are at least 20 Mito disorders that cause Leigh's, so the next step is Caleb will have a muscle biopsy in a few weeks and they will try and find the specific genetic mutation.


The disease is inherited so the Dr basically told us not to have any more kids and to take measures to be sure. (Allison is out of the water, she would have symptoms by now. Jordyn could have it, but we have to wait until she has symptoms to test her. We are not concerned at this point) anyway, I don't know that I was ready to be done having kids. (Jason was done but I figured if I give him a year or two he might change his mind) So while the thought had crossed my mind the finality of the Drs statement was hard to hear.


We really have to wait for the muscle biopsy results to know anything more. As a whole Mito diseases are not curable. It is considered a Rare Disease and there are still many unknowns. The method of "treatment" is HEAVY vitamins. He gave us 4 prescriptions for vitamins today (vitamin C, B-1, coQ10, and L-carnitine) but we can't start them until after the muscle biopsy. There is a chance they won't be able to find the specific mutation, IF they do, then they can tailor the vitamins more. Everything is a little overwhelming still.


He said it does shorten his life and at this point can't predict how it will continue to affect Caleb. (get better, stay the same, or get worse) Caleb had a really hard day today, didn't eat much, threw up, really low energy, so that made it really hard too. We are trying to work through the emotions still.


We trust God and believe He is big enough to heal our precious boy. And yet seeing him like he is hurts us. Anyway, prayers are welcomed.

Since Friday we have gone through lots of emotions and tried to begin to process what this means. Thankfully Caleb has had a MUCH better week and that has made it easier. To tell you the truth my days are too busy to think too much about it. Trying to figure out how to carry Caleb and Jordyn down the stairs at the same time keeps my hands full. (literally!) Jordyn has been a wonderful baby and sleeps most of the day and I'm so grateful!

We have been so blessed with friends and family who are praying and comforting us. I hope to be able to post a little more frequently, If not about updates then just a place to process through some things. Comments are always welcome and please feel free to add Caleb to any prayer lists or groups you have.

Overwhelmed

(not that I have ever even watched an episode of southpark but I thought this was funny!)

My experience as of late (like the last year or so) is in trying new things it's so easy to get overwhelmed.  The two big things that have tackled me are trying to be more "crunchy"  (aka green) and Food Storage/gardening/composting/rain barrels/diversifying investments/getting ready for "what if."  A few months ago I posted HERE that I had to give up cloth diapering Caleb and what a pride issue I had connected with it all.  Well I am happy to report that Caleb has been back in cloth diapers for a while now (except at night, the wet on his skin for so long was the issue and I figured 1 sposie a day was a good compromise) and I've tried to stay very humble about it all. :)

But back to the overwhelmed issue.  I have found that when trying to research and read and do what I think/can afford that is best for my family, it's so easy to get lost in the millions of things people say you HAVE to do.  For me, midwives and birth center/home births have always been normal.  My mom had both myself and my brother at a birth center with a midwife.  So that wasn't a crazy jump for us.  (but little did I know the whole world that would throw us in to!!) Next was cloth diapers.  Again, my mom did it and knowing that you don't have to use pins anymore I was willing to give it a whirl.  So when I was pregnant with Allison I started looking into all the different kinds of cloth diapers that are out there now days.  HOLY COW!! I very quickly became buried in a sea of information and quickly gave up.  I didn't touch the idea for a few months but after a few conversations with some friends decided to gently broach the subject again.  I tried to take it in more manageable chunks and did finally make some decisions and cloth diapered Allison all the way until potty training.

Over the past 3 years I have tried to educate myself and make small changes for our family.  A few things; trying to convert our cleaning products to things with less chemicals, trying to line dry my diapers when it is nice out, giving the kids vitamins on a regular basis, better baby carriers, digestive enzymes vs. antacids, amber teething necklaces, vaccines-or the lack of them, discovering the amazing Eden Salve, and Colloidal silver (I wrote more about that HERE).  But a little over a month ago I wanted to try this "no-poo" thing I heard about and I also wanted to switch to a deodorant that wouldn't give me cancer. (and if you don't believe in that theory I was going for more natural too) So HERE was my initial trial reasons and information.  I gave the no-poo method a month but after that I was done.  I even tried a scrub to get the extra oil out but it still wasn't anywhere near what I liked to touch and fix on a regular basis so I went back.  One of my initial reasons for even trying it was there was no cost to start, and no risk involved.  If I didn't like it I could go back at any time.  So I did!  Currently I only wash my hair about twice a week.  It really could probably go even a little longer, but I'm ok with twice.  I like the way it feels, and yes even smells.  I haven't jumped on the "Make your own shampoo and conditioner kick" yet, but maybe in the future.

I'm still using the homemade deodorant but it did give Jason a rash so he had to go back. :(  So my original statement was about being overwhelmed.  Sometimes it is hard deciding where to start, or deciding to only take one small baby step and not "bite off more than you can chew."  There are so many things out there to change/try that it can be very intimidating!! So little by little I try new things and try to remember that I'm not signing my life away each time I make a change.  If it doesn't work for us, I can go back.  (which doesn't happen often but giving myself permission to go back is huge!) So if you want to start a garden, start one! It may be small and you might not do it again next year, but give it a whirl! (that's what we did, I did a little research and we just did it.  I looked at it like a science experiment and it was a blast! We are even going to plant a fall garden!)

So what's one natural thing you have been wanting to try? I'd love to hear from any of you that might stumble upon this humble (sometimes) ole blog of mine.  Community is such a powerful and necessary thing and can be a valuable tool!  My next venture is worm bin composting!! I'm so excited and I'll share more as we get into it!  (HERE is a link if you just can't wait!)

Love,


Oh, and if any of you are curious about my comment; Food Storage/gardening/composting/rain barrels/diversifying investments/getting ready for "what if."  I'll deal with that in another upcoming post :)

Caleb update- they actually found something!!

Ok, so Caleb had his neurology appointment almost 2 weeks ago.  The doctors couldn't tell from the examination what he has so they took blood.  Well Hallelujah something finally showed up in the blood work!! (this is his third time to have blood taken and everything has come back negative so far) Anywho, so the nurse called me this week to tell me the results.  (by the way I'm pretty sure God has us on the fast track because EVERYTHING has been quicker than they told us.  The blood was supposed to take 3-5 weeks to come back, they had to send it out, but it was 1 1/2 weeks! The same for us getting in to Scottish Rite, getting Physical Therapy set up, and getting into Neurology as well) She said his pyruvic and lactic acid levels were high in his blood.  Everything else came back normal, muscle enzymes, liver enzymes, and I think the Chromosome panel too. She couldn't tell me what that meant (the 2 that were high) but did say the Doctor wants an MRI and more blood work.  So in two weeks we go back in and they are going to do an MRI, more blood work, and a urine sample all while Caleb is under sedation.  Of course I'm not thrilled about the sedation, but I do like that he won't know they are sticking ANOTHER needle in him.  Poor guy has had enough needles stuck in him to make up for the lack of vaccines!! (haha)

From what I can find out the high levels are pointing to a Metabolic Disease/disorder of some sort.  When the Doctor came in and was talking about the possibilites at our last visit he would mention something and I would say, "Oh yes" or something approving.  He would ask if I had heard of that, or knew of a test he was talking about and I didn't know any specifics, but it was just ringing true with what we think is going on.  We have thought all along that it wasn't just a bunch of separate issues, but they are all connected in some way.  From previous doctors, and the therapist his fat reserves are good it's his low muscle tone that is preventing him from doing the "normal" things for his age.  (the eye issues, the foot issues, not being able to sit up straight, becoming fatigued and laying down)

So that's the first thing we have coming up (Sept. 28th), and then we got confirmation for an appointment on October 12th where they are going to do some nerve conductivity tests.  He has to be put out again for this test, sigh, but this one shouldn't last as long.  I'm not sure it's possible they might not do this test if the MRI comes up with something.  At this point I'm grateful that they have a clue which road to go down.  (the neurologist said at some point we may end up at a muscle specialist where they would take a muscle biopsy, but I think with what they found from his blood that may not be the case anymore, time will tell)

Keep the prayers coming.  Oh, and my due date is less than a week away! AGH! Jason asked how I'm going to make it to the appt. on the 28th (especially if this baby comes after the projected arrival) and I said, Um it's Scottish Rite, they have wheelchairs!! :)  And the baby will give me something to do while my precious Bubba is in the procedure.  I'll let you know how it all goes!

Love,

Caleb gets his feet tomorrow!!

These last two weeks Caleb has been growing and changing so much! I don't have an exact answer as to why, if God is healing him, if his muscles are getting stronger as they are supposed to, if switching formulas helped.  Whatever the reason I praise God because it is progress, and we haven't seen much of that for the last 3 or 4 months.  Here's the low down....

Caleb has turned a huge corner in both his eating and throwing up.  He hasn't thrown up hardly at all these last two weeks.  When he did this week it was because he gagged (still a little sensitive with the gagging) but as soon as he was done throwing up, he wanted more to eat.  And he ate a lot! That has never happened.  Then with the eating, um who is this kid?  Caleb used to eat a rotation of about 5-10 things, and that was it! All of a sudden he is eating things that we eat!! And trying new things! I'm so excited!  Eating used to be such a frustration for me with Caleb, I hated giving him the same things over and over, and half the time he would decide he didn't want one of those things on that particular day anyway.  (even though I knew he loved it most every other day)  Last night he ate ribs and corn on the cob! He has decided he likes scrambled eggs, he likes Pickles, which means he likes ketchup, chicken nuggets, and even noodle and meat dishes!! It's been such a crazy change I'm almost giddy. We still don't do too well with anything potato (french fries, tator tots) but I'm ok with that.

Tomorrow is the day we go to pick up Caleb's orthotics from Scottish Rite.  I'm really excited about that too. I'm not expecting major changes right away (although I wouldn't complain if he was walking by the end of the week!! haha) but then the Therapist comes on Wednesday to do the initial assessment and get things going.  I'm so excited she will be here right after we get them to help him transition into them.  Divine timing if you ask me!!

In case you are wondering, they will be very low profile orthotics.  They come up just above his ankles and that is it.  I really don't think most people will even see them unless they know to look for them.  His bone structure is good and they didn't want to mess with his legs or knees.  Who knows, maybe it will be like the eye patch and after a few days we will see HUGE improvements!  Which by the way we patched him faithfully for about a month and then stopped doing it as often and haven't seen his eyes loose control in over a month! (did that make sense?)  Anyway, we are so thankful that God is faithful (which also happens to be the meaning of Caleb, not a coincidence) and he has His hand on our precious little boy. Thank you all for your support as we go through all of this!!

Love,