Caleb's Muscle Biopsy

I really have been trying to make some time to update everyone on how Caleb's surgery went on Tuesday! Geez life is busy! Anyway...
We had to be at the hospital at 6am (sheesh!) to check in. The surgery was scheduled for 7:30 and it was right on time. (love early morning appointments and surgeons that are on time!!) we checked in at admissions, where they asked us to pay the $12,500 that insurance wasn't covering (haha) so we wrote them a check for $50 and went on our way over to surgery. We went to a pre op room where we changed Caleb into the hospital clothes, they checked his weight and temperature, and then everyone came in to talk to us. The surgeon, the nurse, the anesthesiologist, the other nurse, geez! Then they gave him some stuff by mouth to make him a little loopy. After that was good and kicked in we walked with the nurse while she wheeled his bed to "the doors" and we said our good byes.
At this point we went back down to admitting to see if we were eligible for a discount on the hospital portion. (I have no idea what the surgeon, anesthesiologist, and lab fees will be but insurance won't be paying any of that) thankfully they said we could get a 60% discount once we got all our paperwork in. (still working on that) so we grabbed a quick bite to eat, we hadn't eaten yet since Caleb couldn't eat we didn't want to dangle that in front of him! Then we went back up to the waiting room. It was close to 8:30 which is when we were expecting them to be done. They called us back pretty quickly and the surgeon came in and said everything went great. Then we went back to the waiting room. When he started to wake up they came and got us to be with him. We came up to his bed where he was under some blankets lying face down and as soon as he saw us he started to get up and move towards us.(this was the part after his MRI that was the worst, the waking up. He was very inconsolable and agitated. It took almost 30 min to calm him down last time so I wasn't really looking forward to it) I picked him up and tried to keep all the tubes untangled. He had an IV, 2 monitors on his chest, one on his toe, and a blood pressure cuff, and the incision!  Once I got him on my lap I started reading him a book and he calmed down and was great the rest of the time!! It was so awesome! (although he wasn't a big fan of the IV and when the cuff would take his blood pressure he didn't really care for that either, but not too bad) They brought in a DVD player and he watched some movies as we waited out our 2 hours. He drank some apple juice and just sat in our laps. Around 10:45 they started taking the monitors off and getting us ready to go. Caleb was a little sleepy but otherwise acting normal. We picked up 2 balloons on the way out (sissy got the pink one) and away we went.

"what is this thing?"

They gave us some Tylenol mixed with pain meds and he took that twice that night and once during the night but then switched to regular Tylenol. By the next night he was off any meds and acting like nothing happened! He was crawling around and even standing on it. I took off the outer bandage last night and the other part comes off Tuesday.
We won't get results for 4-6 weeks but the hard part is over (for now!) the results will hopefully tell us what 'kind' of Mito he has. Meaning where the breakdown in the mitochondria is exactly. Sometimes they can taylor the vitamins or diet to help out if they can find that.
We were supposed to start the vitamins after the surgery, but we went to Scottish Rite on Monday and we are going to do 1 more round of blood and urine and Caleb has to be fasting and off the vitamins. Sooo, next Monday we are taking him in for those two things and then that afternoon we can start them.

Playing with his balloon on the way home

How it looks now

Overall the whole thing was super easy. (not fun but easy) Thank you to everyone who was praying for us during the procedure and for all your texts and facebook messages.  I seriously don't know how we would get through this without our faith in God and our family and friends.  Thank you so much!!

Love,

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,

Caleb Update

 

Just wanted to update everyone on what's going on with Caleb.  Thank you so much to everyone who asks and tells us they are praying for him.  We still don't have many answers but progress is being made.

 This coming Monday (the 22nd) we go back to Scottish Rite to pick up Caleb's orthotics.  Then that Wednesday (24th) ECI, (Early Childhood Intervention) is coming by the house to do their evaluation and set up physical therapy.  They will come to the house to do therapy and they will decide how often he needs it.  I'm very excited that he will have his orthotics and they will help us build Caleb's muscles.  His leg and arm muscles seem to be pretty good but it's his core that is really weak.  I'm so happy they will be coming to the house, with Squirt due in about 4 weeks that will be such a blessing! I'm don't have any expectations as far as how soon Caleb will be able to walk, but I'm hoping it is soon!

 






The last big thing is we have an appointment with the Scottish Rite neurology department.  It will be Tuesday August 30th.  (soon!) I'm very hopeful that they will be able to give us some answers, or if not then be able to tell us for sure that there is no major problem just developmental delays.  The Pediatric gastroenterologist did call back and say the upper GI came back normal.  His next step would be to do things that the Neurologist will do so he wants to wait for those results. (thankful for that!) So I have no idea what the appointment on the 30th will look like and what tests they will be able to run but again, praying for answers and peace.

                    

Jason and Caleb at Scottish Rite                       Caleb waiting for the Barium to reach his colon

On a fun note Caleb's vocabulary has exploded over these past few weeks.  He talks A LOT! While many of the words are only understandable to me and Jason he is communicating so well! He is so expressive and loves connecting with people.  He loves going to the store and flirting with anyone who will look his direction. He is so sweet!!

Again thank you all for your prayers and support.  I know God has a plan and purpose for our little Squirt who will be joining us soon.  Honestly with things with Caleb, we haven't done "lots" of preparing.  (so glad this is the 3rd time around and we sorta have an idea what's coming :] ) So prayers for God's timing and a peaceful transition would be greatly appreciated as well.

Love,



Eating a sucker trying to help the barium move down, he loved it! (his first)

What does clean smell like?

I initially just wanted to write about my "no poo" journey and homemade deodorant, but then that got me thinking, what does clean smell like?  When I first started researching "no poo" I read a few places about your hair smelling like hair.  Hmm, what does hair actually smell like I wondered? My hair has always smelled like whatever shampoo and conditioner I used.  Now my reasons for trying this whole "no poo" thing are more of just trying something different than anything, that and this is cheaper and faster.  But I guess if I'm honest I do like taking little steps toward eliminating chemicals from my family's day to day life.

I think it started back when we decided to cloth diaper Allison. Trying to do our part in not filling the landfills, not putting the chemical filled disposables on her, and knowing that we were planning on more kids the economical side was a big pull too.  After that, I guess we got sucked in! (haha, just kidding) But in using a midwife and starting to talk to people in those circles you have the opportunity to see a whole new world. (are you picturing yourself on a magic carpet ride? I am.  Love that movie) Our Chiropractor was a huge catalyst (shout out!!) in helping us to change our way of thinking and eventually many of our methods.

But back to the point. What does clean smell like? When I started to look at cloth diapers and how to wash them one of the biggest things you read is how you want your detergent to be "free and clear." No dyes, no perfumes, no additives.  I remember washing some diapers and smelling them.  They didn't smell like anything, and I had read that if they don't stink, then that's good.  Weird. I mean clean has to smell like something right? Just watch a Pine Sol commercial right?

So over the last few years I have started to try and be more natural in my cleaning methods, vinegar is starting to become my clean smell, and in our medications.  The way I see it, when God created the earth, at some point, maybe after the fall of Adam and Eve, he created things in the earth to help us.  I mean back in the Bible days I'm pretty sure they didn't have all the drugs and anti biotics we do now.  But I think there were things all over in nature that produced the same if not better results.  And I'm guessing if they worked back then, they probably still work now.  i.e. Baltic Amber (you may have seen Caleb sporting his super cool necklace, there is actually a reason he wears it, you can read more HERE) Colloidal Silver, (see THIS previous post), garlic, and a bazillion other things.

And back to the point again, (geez even my blog is ADD, I guess since I'm writing it that makes sense) What does clean smell like?  I've heard for a long time that deodorants and anti-perspirants have aluminum in them and being that it is applied every day it really is bad for you.  (more reading HERE) So I decided to try a home-made deodorant that I have heard from many works really well.  I tried it today for the first time but I'm really interested in what my husband thinks.  (him being the stinky one and all :]  ) It's hard to find a deodorant now days that doesn't have some sort of scent.  Even the "fresh" scent has a perfume-y smell to it.  You can't hardly find unscented.  Hair products are the same thing, they are all scented.  Now don't get me wrong, not all scents are bad.  There are many essential oils and natural products that have scents that can be pleasant and not harmful.  But let me get to the point (it's about time right?) in today's society we think clean needs to smell like something.  Could it be that clean doesn't have a smell? I'm beginning to believe that just might be the case.  Clean is so refreshing and......not smelling.  After the clean you can always do things to smell pretty, or like I said some smells are fine, but what is producing that smell? Is it a natural ingredient or is it some chemical that is artificially produced to re-create a scent?

I've also started to realize that if you make your own stuff (cleaning products, natural remedies, etc) it really can be much cheaper than the "normal" store products.  I know you can buy natural products at the stores and they tend to be more expensive than the "normal" products.  But if my hair regimen continues I'm approximating I'll spend about $15 on hair products a year.  That's right, a year.  A box of baking soda and apple cider vinegar is all I use and only a tablespoon or so at a time once a week or so. (and that might go down depending on how my hair oils continues to adjust over the next few weeks) I'm currently going on 3 weeks not using traditional shampoo or conditioner and it's going great.  (now to be honest one of the reasons I chose to do this is that I knew I could go back at any point and I already had the ingredients to get started) But it's going great and I don't have any plans at this point to go back.  Want to join me?

oh and if you are curious about making your own deodorant I used THIS recipe.

Caleb's Scottish Rite Initial Visit

Today was the beginning of our Scottish Rite journey and we think it went really well.  We started off in the orthopedic department since that is where the issue initially presented itself.  One Dr. came in and did an initial evaluation talking to us and looking him over.  His initial eval said about what we thought; his bones all seem fine, it looks like the muscles are just weak.
So then the Orthopedic Surgeon came in and we talked with him.  He wanted to do x-rays just to be sure but was pretty confident everything would be normal.  We told him about our other concerns, his eye, the throwing up, the muscle weakness overall, and he agreed that neurology might be able to give us some answers. (last night as I was looking around on the website I found out they had a neurology division, didn't know that!) He kept saying there might be a reason for his overall "loosey goosiness" (his words) But he said he wanted to go ahead and fit him for some orthotics to give him some support.  A therapist came in next to evaluate him.  She agreed about the orthotics and also wanted to get him going with some physical therapy through ECI. (Early Childhood Intervention) She said she thinks if we focus on his core muscles the other stuff might get stronger in the process.  (exactly what our Chiropractor said) They come to the house to work with him, how much is determined by the initial evaluation.

Then we headed off to x-ray.  That went pretty well, although I wasn't allowed in the room since I'm pregnant.  (the guy was funny, there is a sign on the door that says if you are pregnant to tell the tech.  I said, "You can tell I'm pregnant right?" He laughed and said yes but it's always kinda weird getting that out of the way with an obviously pregnant women. funny.) Anyway, after that we headed over to Family Services (like Social Services) to drop off the paperwork to get started with the physical therapy.

Our last stop was back down to Orthotics to get him fitted.  They made little casts of his feet and then cut them off.  He did really well during that but watched everything.  We picked out camo to go on his orthotic, although most of it will be inside a shoe but it's more fun than white.  That Dr. said he won't need "special" shoes, but they might need to be wider than what you normally find.  He said they have shoes if the ones we have don't work.  It will take a few weeks for them to make the braces, so we go back in about 3 weeks to get those.

They passed all our info on to Neurology and they are supposed to call us within a couple of weeks to set up that appointment.  Hopefully that will go quick since Squirt is due to join us in about 6 1/2 weeks.

Caleb has an appointment with a pediatric gastroenterologist on Thursday to see if we can find a reason for his continual vomiting.  We will see what happens with all that.

Overall we are happy with today's outcome, they addressed all our concerns, agreed with what we felt and what we have been told by other Dr.'s.  I told Jason that sometimes I think it would be easier if they did find something "wrong," but of course that is scary too.  So for now we keep on taking steps and the Dr. today said too that there might not be "a reason" for all of his symptoms, but I am hoping that IF there is the next few visits (the GI, the therapist, the Neurologist) will find it.

Thank you for all your prayers!!
 

A more natural way-gardening, bug bites, and for anything that ails you!

Lately the Jacobs' house has been doing things a little more old fashioned natural. Our garden has probably been the biggest undertaking, and while I can't say it has/will feed our family for months it has been an amazing learning experience and hopefully in the future could feed us for a while.  I've run into all sorts of things.  Birds and spider mites really like tomatoes, and now that I know that next year I will cover my tomatoes early on in the season, and watch closely for those pesky bugs.  (and not wait until they have devoured both my tomatoes and beans, grrr!) I now know that cabbage takes up a ridiculous amount of room and is probably not worth it for us.  Watermelons also take up a bunch of room (seriously) but each plant produces more than one watermelon so I say that is a win.  We also tried lots of different varieties of tomatoes and 2 different kinds of watermelon.  Some worked better than others so we have that to go on for next year.

We also learned that you don't have to spend lots of money making the boxes or on the soil.  We used Mel's mix for the first two boxes (and spent a pretty penny on the soil!) but for the third one we used some recycled wood and left over dirt and things are growing quite nicely there as well.

Most everything grows way better in April-June.  Everything grew bigger in the early months, now it is so hot things are much smaller when they are ripe.  What a  learning time this has been!


With all that being said I have so thoroughly enjoyed watching my little plants grow and produce stuff.  It's been so fun to go pick something from the garden, wash it off, and eat it. (or cook it)

We started with almost all "starter plants" this year. Not sure if we will make the switch to seeds next year or not.  Honestly the plants were not all that expensive. (yes seeds are really cheap) but I think there is more room for error with seeds and for many things the growing season is so short (especially when we have 100+ temps for half of June!) they recommend plants many times.  We will see what we decide for next year!

Now on to bug bites! I have always been irresistible, well for mosquitoes anyway! They LOVE me.  And I HATE them!  There were times when I remember scratching the bites until they bled, or "accidentally" scraping them with my razor (when they were on my legs) because I would much rather deal with a scab than the itching! I also have always had bad reactions to fire ants.  Like if I got 1 bite on my foot I couldn't wear shoes for a week! They would swell, get black and blue, seriously crazy stuff. But I have found something that works REALLY well on any kind of bite and seems to speed the healing process.  It's call Eden Salve and you can only buy it at The Bulk Herb Store.  Here is what they have to say about it:
Why It Works:
We formulated this salve using an effective blend of herbs and natural ingredients to numb pain, as well as heal and soothe. It acts as an astringent to draw out infection and poisonous bites. It is an antiseptic and fights bacteria. When you and your family needs it, Nature’s Healing Touch is here for you!


I have a bad habit of tending to my garden at dusk, you know when all the bugs are out? I have put this stuff on all my bites and they are gone by the next day.  Benedryl cream NEVER did that for me! If you read the comments on the website people have also used it for sunburn, cuts, and even Brown Recluse Spider bites!! This is some good stuff!! HIGHLY recommend it!!


Ok, switching gears, for anything that is wrong with your body (seriously) Colloidal Silver.  I have mentioned it on my facebook a few times, but over the last 2 months we have personally used it for:
-An Ear infection
-A massive sinus infection
-Warts (a crazy stubborn one on Jason's hand that he has tried EVERYTHING, even tried to cut it off!)
-Athlete's foot
I'm telling you, this stuff is so crazy awesome!! And I just love that I don't have to rub/ingest chemicals, or wipe out our bodies good bacteria in order to kill the bad! It's safe for Caleb to take and it taste's like water.  (You can also use it to clean with since it has both anti bacterial and anti viral and anti fungal properties, but our budget doesn't exactly allow for that right now! So we will stick with vinegar for now)  We buy ours from our Chiropractor, but most any natural place sells it.  If you have heard bad things about it you can read HERE.  One thing to note- you really only need 10ppm (parts per million) less is more with this stuff.  


And one more natural remedy for you women out there.  If you get a yeast infection THIS has been my go to.  It has worked better than other natural remedies I have tried. I also like it because you can do it during the day where as over the counter remedies you have to wait until night time. (laying down)


I also have a short update on Caleb, but since it is into the wee hours of the morning that will have to wait!

Caleb's Eyes

We had our appointment a few days ago and things went really well.  The first nurse came in and tried to make his eye "do it's thing" but couldn't.  She tried all sorts of things.  I described what was going on to her and she just had to take my word for it because his eye worked perfectly.  Then they came in and dialated his eyes so they could see if he needed glasses.  (many times being far-sighted causes the wandering eye) He was not a big fan of the eye drops, in fact it was almost as crazy as getting his blood taken. (although thankfully not as long) We went out to the waiting room to wait for his eyes to dialate and then they called us back again.

The doctor came in this time and tried again to see the problem.  He was able to see in his eyes and determine that he does NOT need glasses. (YEA!) But again his eyes did not want to "cooperate" and they never got to see what we see at home.  So they said that his eyes are pretty strong (they see lots of cases that are far worse) and we should patch it 1-2 hours a day. The patch goes on his strong eye (the left eye) to help the weak one get stronger.  They gave us a few patches, we made an appointment for 2 months later, and we were on our way! We were only there a little over an hour.

They put a patch on him before we left and he did great! It's a disposable patch, like a sticker almost, and we use a new one everyday.  He messed with it just a little at first, but then forgot about it.  It's been pretty much like that everyday, he touches it a few times, then leaves it alone for the rest of the time that it is on.

We can already tell a difference, his eye doesn't loose control as much as it used to, and he seems to be able to get control back quicker.  We are very thankful for the results of the appointment and the improvement of his eye.

Our next step is Scottish Rite and our appointment is August 9th at 8am.  It can't come too soon.  I know he wants to walk but he doesn't have the support to be able to.  It makes me sad sometimes so I am very ready to get him some help!

A short update...

We got the results back from Caleb's blood work and it all looked good except he has a bacterial infection.  We are not sure how long he has had it, so it is possible that's why he has been getting sick.  We won't know for a few weeks.  In the meantime the Dr. wants me to keep a food journal to keep track of what he is eating, which I think is a great idea, but I'm believing we won't need it :)

Caleb's first opthamologist appointment is next Wednesday morning, we would love your prayers and I will let you know how that turns out.  I'm ready to get these balls rolling, I think :)

We also have an official appointment at Scottish Rite! I received the acceptance letter in the mail and the appointment is set for Tuesday August 9th at 8am.  I wish it was sooner, but from what I hear once you get in things move pretty quickly. We think Caleb is ready to walk he just doesn't have the proper support.  He wants so bad to keep up with his big sisters!

Thank you for all the love and supportive comments, and of course the prayers.
Love,

Caleb's Chiropractor, Pediatrician, and ER visit

Well this week we saw our Chiropractor and our Pediatrician.  Dr. Jim Bob (the best Chiropractor ever!) said he thinks Scottish Rite is the way to go for Caleb's feet.  He doesn't think the hips will need to be repaired, he things the feet are effecting the hips and once the feet are "fixed" then the hips can be adjusted into place.  So hopefully the Doctors at Scottish Rite will find the same thing.

However our appointment with our Pediatrician was not so uplifting.  Our actual pediatrician has not seen Caleb before.  We took Allison in every couple of months for well child visits starting at 7 months until 2 years.  We did a "delayed vaccine schedule" with her.  At 2 years she was "caught" up except for 1 or 2 vaccines.  So we brought Caleb in at 6 months for his first well child visit.  Well because of the way Doctor's offices work he saw the Physician's Assistant at that appointment.  When I quit teaching we had to get different insurance and we weren't sure exactly how they covered well child visits.  Turns out the only thing they cover is the actual vaccine itself.  So with our current budget we didn't have the money to take Caleb in every 2 months.  In March Caleb and  Allison caught a nasty stomach bug and I ended up taking Caleb in because he didn't seem to be getting better.  (Of course on the day we took him in he miraculously recovered) Anyway, since March every few weeks he gets sick again.  He can only keep down Pedialyte and maybe bananas and dry cereal. It can last from 1-3 days.

This problem has gotten a little sidelined as we look to have his feet and eyes checked out.  But it has been nagging at me especially as it continues to come up again.  He started throwing up again on Thursday evening...(our appt was Friday afternoon) While we were at the appointment on Friday he started dry heaving (he has never done that) and was very upset and fussy.  In the past even when he was "sick" he was still his happy little self.  Anyway, the pediatrician was not very calming nor consoling when she talked to us.  She basically lectured us for not bringing him in, told us he could go blind, she was VERY concerned that he was so small and if we had brought him in "like we were supposed to" she could have sped up the process to get him into an eye doctor.  I tried to explain to her why we hadn't been in since his 6 month and of course I got pretty emotional.  I tried to do what was best for my children and I didn't need her lecturing me about how I had "failed." I saw the issues and did what I knew to do. Anyway, she ended up saying that she wanted to take some blood and test for all sorts of things.  Thyroid, kidneys, I don't remember what else but that is where she wanted to start.  With everything going on I didn't think to ask about something for him throwing up.

We went to a different Lab to have his blood drawn and we picked up some Pedialyte on the way.  Well he ended up throwing that up too and dry heaving again.  He was very lethargic and sleepy as well.  Again, he has never been like that before.  (I thought he was just tired at the Dr. because he was missing his nap) so at this point we tried to get a hold of the dr to get a prescription.  Well they had closed 4 minutes earlier and a different doctor was on call.  They don't prescribe medication after hours and his recommendation was to go to the ER.  grrrrr. But at this point he was acting so out of the ordinary we did.  We checked into the Medical Center at Lewisville ER. I was hoping they wouldn't have to take blood since he just had that done (they had to stick him 3 times to get it right, ARGH!) They ended up giving him some anti-nausea medication and some Tylenol   (his temp was 100.8) After about 15 min. they let us give him some Pedialyte and he was able to keep it down, yea! His temp also went down and he was acting much more like himself.  So they gave us a prescription and let us go. All in all I was pretty satisfied with how the whole thing went. (granted I haven't seen the bill yet, ugh) I didn't know how it would all play out otherwise I would have gotten something from the Doctor when we were there! Live and learn.  So we spent a little over 5 hours in doctors offices, labs, and the ER.  But he was feeling much better and that is what mattered.

So now we are supposed to find out the results from the blood test on Monday and the Pediatrician is going to call Scottish Rite and another eye dr. as well to see if he has any openings sooner than our current appointment.  Part of me hopes that they find something in the blood tests, then at least we can move forward.  But of course I don't want anything to be "wrong" with my little bubba.  However, something is wrong, and I want it to be "fixed." One other thing is that the ER and another source recommended seeing a Pediatric gastroenterologist for the throwing up.  We will see if the blood gives us any answers, and if not then it looks as though we might be making another appointment.  

God please heal my little boy.

I wish it was this easy............

Prayers for Caleb

Just thought I would write a post about my baby and ask you for your prayers.  When Caleb was born we noticed he has very flexible hips.  When we would sit him somewhere his feet would lay completely flat. [See pictures at left ] We just figured he was our little noodle boy, and loose at the joints.

 Since Caleb starting crusing (right after he started crawling, at around 9 months) his feet have also rotated so he is almost walking on his ankles.  We just watched for a few months to see what would happen.  Kids foot bones are still being developed for the first few years of their lives so we made sure to keep him in flexible soled shoes or barefoot.  Over the last month I have been thinking about taking him to see a podiatrist.  So I called on Monday and made an appointment. 

They had an opening for Wednesday morning so we went in.  The Dr. looked at his feet and hips for about 5 minutes and she knew right away that he needed more help than she could give him. She said she thinks his hips play a part but that his left foot had "club like" qualities. [I have looked around and found a more acurate picture, Talipes Valgus, and his is a little more severe than in the picture]  When he was born it wasn't like that which is another reason she thinks the hips play a part.  So she is in the process of referring us to Scottish Rite Hospital here in Dallas.  We were a little shocked because I was just thinking he might need special shoes or at the most braces.  We are supposed to hear something by Friday about who to contact to set up an evaluation there.

So, we are still trying to wrap our brains around what all this means and how comfortable we are with it all.  We are not quick to rush to the Dr. for just any reason (except our Chiropractor, love them and trust them, I'll go to them at the drop of a hat!) But we "wait and see" for most everything.  So the possibility of him needing surgery was NOT the direction I was thinking.  We are praying for peace and direction.  I don't know how long the normal referral process is for Scottish Rite, but if that is what we are supposed to do I'm praying for a super expedited timeline, and if it isn't, then things will get clogged in the works as we look at other possibilities.  (we are going to see Dr. Jim Bob,our chiropractor, see link above) next week to get his opinion of the situation.  We would so appreciate any prayers for us as we navigate these uncharted (for us) waters. 

And since we are on the subject of Caleb and Dr's and prayer there is another issue that we are getting checked out next month.  Since about 9 months one of Caleb's eyes occasionally turns in.  Usually when he is tired, concentrating, or watching things come into his mouth.  At first I just watched it but after a few months it would seem to get stuck and he couldn't fix it.  It still only happens when he is tired or watching things come into his mouth, but after researching on the internet (good old Google!) my "Professional" opinion is he has what's called Strabismus.  The muscles in his one eye lose their ability to control the eye, which in his case make his other eye turn in slightly as he tries to focus.  

At first we tried to get him to focus on something farther away and he seemed to correct it.  Now if we cover the good eye he seems to be able to correct the "bad" one.  So again, from what I have read and heard from a few people is that he might only need an eye patch for a while.  (you'd better believe I'm going to pirate out everything he owns!) However, after my incorrect diagnosis of Caleb's feet I am trying to just wait and see what the Dr. says.  Our appt. is on July 7th (it was a 6 week wait to get in!) 

This is the first time we have dealt with any real medical "problems." We truly believe that God is still a healer and nothing is impossible for Him.  Again, if that is the path he has for us we have faith and will walk in that.  Will you believe and pray for the same? What an amazing testimony it would be.  And if he chooses to use Dr.'s to fix these issues we will believe for complete healing for Caleb as well.  Thank you for your thoughts and prayers.