Update-Lots going on!

I fully expected Caleb to start going downhill after my last post....but he hasn't!! He is still able to hold on when you hold him and he army crawls sometimes too.  We are so excited to see his continued energy, maybe the vitamins are making things more even for him, or maybe they are just keeping him from going down.  Whatever the case, Praise God!  I just received some Juice Plus vitamins from an awesome friend so I have started giving him those as well as his prescribed vitamins.

Don't touch my corn!

 His appetite has gone up some and we aren't having to threaten (haha) him as much.  The other night he even ate what we ate! (chicken fried chicken, peas, and mashed potatoes) We have switched to goat's milk and pediasure in his bottles and he seems to tolerate it fine.  We are really trying to get the calories on him so we are trying out different mixtures and might try and switch to a higher calorie drink.

Along those lines....we were able to attend a Mitochondrial Disease meeting last week and it was great! There were about 8 families there and they shared some good information and then we hung out and talked to each other.  This was only the 2nd or 3rd meeting in our area but we plan on attending the bi-monthly meetings from now on.  Many of the families have kids age 5 and under with Mito so it was great comparing notes with them. Since there is no cure for Mito you really just manage the symptoms.  So for some of the kids their GI doctor is the main one they see since they have lots of stomach, intestine, digestion, issues.  Some have major heart or lunch issues.  Caleb's main issue is his muscles.  So after talking to some other families Jason and I are considering adding some other doctors to Caleb's "team."  We went to a GI last summer and I really liked him.  I think we will go back if for nothing more than yearly check ups, but he may be able to help us as well.  Caleb is still really small and has a hard time gaining weight.  At the end of last year he was up close to 18.5 lbs.  But recently he was closer to 17.  It seems like he gets stuck and can't make it over a certain point.  Last summer we couldn't get him above 16.  We REALLY don't want to have to do a feeding tube so we want some help on how to get his weight up.  If he needs the feeding tube we of course will go that route (It wouldn't take the place of his normal eating, just supplement)  but if there is something else we can do we want to try that first.  So it's probably best we have a medical doctor helping us out.  We are also looking at some other "natural" doctors and practices to add to Caleb's "team" and at this point are a little overwhelmed with where to start!

Caleb has a head lamp on, they love to play in these "doors"

Something that might determine how many people we are able to add to The Team is insurance.  What we currently have is no longer working for us since Caleb's diagnosis. (it's not really for people who actually need any type of on going care, it's really just for occasional sickness and emergencies)  We tried to apply for a different kind of individual insurance but because of Caleb's condition they wanted to more than double the already expensive premium! (that on top of the high deductible and co-insurance) Soo, we are looking at other avenues.  Caleb does qualify for a Medicaid Waiver but the waiting list is 3-5 years and we aren't sure that would be the best route for us anyway.  However, Jason talked to a company yesterday and they told us about something that may just work.  It is a State Pool insurance for people just like Caleb.  He would be on it by himself and then the other 4 of us would get a different plan.  (Jordyn is currently not on any insurance because our current company won't let us add her and we can't cancel our current policy and get a new one because of Caleb, and round and round the cycle goes.  We have been working on this since Jordyn was born) We are really praying this works out, and that we can find affordable insurance for the 4 of us.

Here is the chair that was given to us

In more exciting news we got a Kid Walk!!!  Like we have it at our house and Caleb loves it!  Here's how that all went down; Last week we went in to see our Wheelchair lady who had helped us out at Scottish Rite.  We brought her the chair that we had been given that needed some repairs and additions.  (our Physical Therapist had it at her office and it was donated to them but had been sitting in a closet for almost 3 years, just waiting for us I think!) So we took measurements and looked at options for that chair.  She also had a Kid Walk that we got to try out and see how we like it.  Here is how that went:


So we were sold! We had a Ministry that offered to buy us some equipment so we told them we wanted that chair.  They came back and said they didn't have that much money at the moment but would work on getting it.  So I thought of a plan B.  We have been looking at Craigslist for the last few months for pediatric wheelchairs and power chairs.  I finally figured out a way to search all of craigslist instead of just city by city.  We figured if we needed to drive to save a few thousand dollars we could make that happen! So I searched for a Kid Walk.  Lo and behold, 1 came up, it was in Oklahoma and it was 1/3 of the retail price and was hardly used and looked to have the options we needed.  We contacted the owner and started discussing where we could meet.  Then I remembered that my Mom was visiting a friend in Oklahoma City. (about 2 hours away from the owner) She would be coming back to Dallas the next day, so I called to see if she could meet this lady.  She said, "of course!" So the lady agreed to meet her and she was able to pick up the chair the next day!! (Jason was going to have to drive up there on Sunday, about a 5-6 hour drive, and back home that day as well.  Something he was willing to do but sooo nice he didn't have to!) We contacted the ministry and they said they had the money so make it happen.  We almost couldn't believe how seamlessly it all worked out.

We put Caleb in the chair last night for the first time and he cried when he had to get out.  He still has some work to do before he can really walk more than a few steps, but one other great thing besides walking is that he can stand up and play with toys.  He stood and played at his train table and his tool bench last night and had so much fun.  Normally he is in a chair or someone's lap.  Even then he is very wobbly and has to work so hard at stabilizing his upper body that he can't really play with 2 hands.  It was so great to see him really be able to play with the toys and not have to work so hard! There is a seat in the middle that he sits on so he wasn't really standing, but that is great for him to have that option and just to be vertical instead of laying on the ground was great too.  We are so blessed!

I guess if I posted a little more often I wouldn't have to squeeze so much into one post! But it seems like not much is going on, and then WHAM, everything happens in one week! Anyway, I wanted to give you guys some things to pray about for us.  We appreciated all of your love and support and prayers, so here are some specifics:

1. We need some wisdom and direction on which Doctors to add to our Team
2. Pray that the insurance situation gets taken care of.  We would like Caleb to qualify for the Pool Insurance and to find something affordable for the rest of us. (does that even exist? affordable insurance? :)
3. We need to do a little construction on the house.  We need a ramp put in so Caleb can have access to and from the living room and out the back door as well.  We aren't really sure how to approach that and don't have the funds right now to make it happen on our own.
4. Continued strength for Caleb and that he would be able to tolerate/cooperate eating more.

I think that's it for now.  Thank you again for praying for us!

Love,
Jessica

One day at a time

It's been almost 3 weeks of "Caleb the Strong" over here.  We are loving it! What does that look like? Well for him it means he doesn't like to stay where you put him :) He is constantly getting down from the couch and his chair. (sometimes he gets stuck standing up, he hasn't quite mastered getting down to his knees yet, so he yells and I come help him. :)  ) Anyway, he moves all over the living room, sometimes by rolling (his quickest form of movement) but also by army crawling.  It takes a lot of energy and it shows on his face, but he does it.  He holds on to your arm when you carry him and he can hold his head up pretty well all through out the day.  He loves to kick his feet and he even pretends to jump rope sometimes.  He explores a little more than normal, and he loves going outside! He would slide all day if someone could help him. (I can only make it about 5 times before my back is killing me or someone else is pulling at my pant leg.  However Jason is so great with him and plays with him all the time!)


What I have noticed is that his appetite is not as big when he is strong.  Kinda backwards.  He eats, but not great and I have gotten to where I have to force him to eat.  I really only have to pin him down to get the bite in his mouth, then he chews it up and swallows it on his own.  Crazy kid.

We added pediasure to his bottles which he loves (duh, sugar, what's not to love) so he drinks about 3 eight ounce bottles a day.  It's a combination of formula, goat's milk, and pediasure.  He gets a good boost of calories from the bottles so we are thankful for that.  He doesn't tolerate cow's milk very well and goat's milk is really expensive.  So not sure when we will get him off the formula.  The Doctors aren't really concerned nor is the nutritionist.

I of course pray that he stays strong, but the reality of Mito is that this cycle will probably end soon.  The last time he was this strong was at the beginning of November.  Then at Thanksgiving he went down.  We don't know what "normal" will be for him yet.  It will probably be another 6 months before we see a real pattern.  As far as the vitamins, we hope they are doing some good but honestly we don't know and probably never will.  Caleb started them very early on in the whole process (compared to many other children, some go for years not knowing what they have) so we really don't know what his baseline was before vitamins.  I'm totally ok with that and we will keep taking them believing that they are doing some good.

My last thought for the day...(wow, I'm not writing this at midnight! score!) the title.  Jason and I first really learned this phrase back when we were first married and going to counseling and some recovery groups.  "One day at a time." Usually used to reference addicts and helping to cope with the overwhelming feelings that sometimes happen.  You don't have to not do (fill in the blank) for the rest of your life, just take it one day at a time.  Sometimes one hour at a time.  Well recently it has taken on a new meaning for me.  Last time Caleb was strong it was really hard when he started coming down.  I didn't really enjoy any days that he was strong after that because I just knew it wouldn't last.  People would comment on how well he was doing and in my mind I would think, "yea just wait until next week."  While that may be true, I can still enjoy his strength today.  I can take it one day at a time and enjoy the victories of today.  Tomorrow may be a different story, but if I don't enjoy the strong days, well, I need to.  I'm not going to lie, it is really hard because short of a miracle from God (which we still pray for daily) he probably won't "get better." The physical therapy and occupational therapy is really just keeping his muscles moving and trying to teach them how to work.  But it's not like it's going to teach him to walk, or to get stronger.  His muscles don't make the energy necessary to give him strength.  I think he will walk when he gets a little more mature and independent and understands what it all means.  But I am so thankful that we have these amazing opportunities and people that can work with him one on one.  They come to the house and they provide emotional support too.  So with all that rambling, I am learning to be thankful for the strong days.  If there are 1, or if there are 30.  I rejoice for Caleb's little victories.  Like catching a balloon with two hands, putting a Mr. Potato Head piece in correctly, or army crawling 5 feet.  He is my little champion and I can't wait to see what the future holds for him!

On that note the pictures posted throughout the blog were taken just a few weeks ago.  If you would like "real" prints please email me, don't try and print these :)

Love,

Jessica

A Thankful Post

Lately I feel like I only post when I need to vent or when something major is going on, so I thought I'd better post when things are going well too. :)  My last post we were starting to look at wheelchairs and were starting to think about the church nursery and Caleb moving classes.  Well that very next week Caleb went into his regular class like normal.  When I went to pick him up the lady that was holding him came out and said she wanted to introduce herself, she is the Special Needs Coordinator for the nursery!!! Say what?!!  How did we not know there was even a special needs department?! (At first I was a little upset we hadn't been told this, but more than that I am so thankful that our church DOES have this and we are finding out about it) So we talked about Caleb and what his capabilities are.  She told me that there are 15 people that work with just the special needs kids and can help them mainstream into the regular classroom or can take them out to a special room if they need it.  I was totally blown away! I was so thankful that the very week that we were starting to try and figure out how to get Caleb into a class with his peers, we find out about a whole program designed to do just that! So thankful! They will help us figure out what Caleb needs and how to get him into the class he needs to be in.

I also talked with our Physical therapist about wheelchairs.  We are going to a special needs fair tomorrow to hopefully get some more information on some different types available.  It is such a big task and we don't really even know where to start with it all.  We want something that will support Caleb but nothing too big and bulky either.  There are so many different kinds of wheelchairs, and I can see the benefits of them all.  A gait trainer so he can walk, a stroller so we can push him and he can have a tray that attaches to it, an electronic one so he can get around on his own.  Or the Cadillac of all wheelchairs I have see so far is HERE. (it's the one on the left)  Holy Cow that would be so stinking cool for Caleb!! Anyway, I'm trying to take it one step at a time and figure out what we actually need.  And so the research begins!

Allison and Jordyn are doing wonderful.  Allison is such a talker and says the craziest things all the time.  She remembers any place we have ever been and can tell you how to get there as well.  You think I'm kidding.  Jordyn is so happy and content where ever she is.  Yesterday she started "talking." Saying dadada, and lalala.  It's so cute! She makes me smile and I'm so happy she is part of our family.  I need to upload some more pictures from my camera and my phone, but since it's close to midnight, it's not going to happen tonight!  Much love to you all.

Love,
Jessica

A hurting heart

Tonight my heart is hurting.  A couple of things prompted these feelings.  Thursday night Jason and I got talking about Caleb going to the church nursery.  Right now he is still in the 9 month-walking room.  He will be 2 in two months.  He told his teacher on Thursday he wanted her to call me.  So she did and I came to see what was up.  He then told me he wanted to go play in the bubble room.  (obviously not in complete sentences, more like 1 and 2 words, but anyway it was very clear what he wanted) I say this to show that his mental faculties are not lacking! He can manipulate like any normal kid. :)  Then he tried to put on the water works when I said no he couldn't go play.  I laughed.

So when I drop him off in that room, a little part of my heart hurts.  We have talked to the nursery director and she has said that when he turns 2 he can move up to the 2 year old room.  (he will just skip the 1 year old room) So Jason and I were discussing what that would look like.  He can't sit in a normal chair very well at all and especially not for anything length of time.  He can't really play in a room full of kids on the floor either.  At home he can get out of his chair (it's a nice padded rocking chair) and he usually gets around by rolling to where he wants to go.  He usually lays on his side and plays with whatever he wants to.  That won't exactly work at the nursery.  So how do we give our kid a normal experience?  We are going to have to talk to them about it and discuss some of the ideas that we came up with, but for the first time I started to realize (just a little bit) what we are going to have to do for the rest of Caleb's life.  Caleb is different and has special needs, but we want him to experience everything he can.

Jason read Colt McCoy's book and back before we knew what was going on with Caleb he was telling me that the book was talking about how Colt's parents tried to prepare him for the road, not the other way around.  But I have no idea how to do that in this case.  I mean, how do I do that with a special needs child? A child who isn't like everyone else. A child who is going to look different than everyone else.  There are so many things that I feel so ill-equipped to deal with.

Anyway, I pictured him in his class, and I tried not to think about kids making fun of him.  Or not talking to him because he is in a wheelchair.  (he isn't yet but we are going to move that direction probably) The Parenthood episode this week had Max (the character with Aspergers) befriending a kid in a wheelchair.  The parents of the kid in the wheelchair brought him over and told Max's parents that he has never had a friend before.  Ugh. My heart hurts for the struggle that Caleb will have in this area.  I mean he already got the short end of the stick physically, but now this too?  Ugh.

And to top it all off we went out to eat after church tonight.  Watching my little precious boy struggle to sit up in a highchair was killing me.  His eyes were rolling around as they do when he is tired at the end of the day, and he was having trouble holding his head up. Tonight it got to me.  Most of the time I'm in "business mode" trying to take care of all 3 kids.  But for whatever reason tonight I saw it and I hurt for him.  So if that's not enough, there was a table close to us and the young girls were staring and laughing at Caleb.  Ugh.  Like an arrow through my heart.  So many things they don't understand.  So many things I have never thought about or thought I would have to prepare for.  My sweet smart boy that so many won't even want to get to know because he looks different.  He tries so hard.  He is so strong and makes his body work in the confines of it's weakness.  They don't even know! And it hurts me.  It hurts me for him, not for me.  How do I prepare my little boy for this cruel, harsh, cold world?

sigh. I guess one day at a time.  That's all I can take right now.

Moving forward we are going to talk to his physical therapist about getting him a wheelchair.  Most of the time the double stroller is the best thing for us to use since Jordyn is not walking yet.  But as Caleb gets older we think a wheelchair might suit his needs a little better.  So we are hoping that Scottish Rite or MDA will be able to help make this a possibility for him.  I would love something like the KidWalk, I just saw it on another blog and thought it would be great.   (on looking for the link I actually found quite a few videos of kids with Mito walking in them) I have also heard great things about Convaid and their strollers. But we will see what all happens in that area. Thanks for your prayers and support.

Love,
Jessica

Results....Finally!!

After more than two months, we finally received the results from Caleb's muscle biopsy today.  We made this appointment back in October before anything had been scheduled but it worked out perfectly.  I called yesterday to make sure they had the results so we would be able to talk about them.


So here is what they found; the name of his particular disease is Mitochondrial DNA depletion with a Complex 2, 3, and 4 dificiency.  He said it's very rare but they are sure that is what he has.  (The Leigh's Syndrome is caused by the Mito) So they found the mutation in the mitochondria, now they are going to search for the gene.  (I think they are looking for the gene that causes the mutation.  I was able to keep up with almost everything scientific he said and I asked lots of questions but now that I'm typing it up I'm not completely sure how to word it, but I think that's right) Anyway, hopefully there is enough muscle left to test for the gene. (we will know within the week) If there is, then they should have those results in about a month.  Again they are saying a 50/50 chance they will be able to find the gene.   At this point the only thing that finding the gene will do for us is help us look at other children with the same gene to get a rough prognosis. (If there is not enough muscle left he said they can take a quick liver biopsy with just local anesthesia) 


As far as what "normal" looks like from here on out, we will meet with the specialist once a year and the neurologist at Scottish Rite twice a year.  They will keep an eye on his heart and liver through EKGs and blood work.  We are probably going to start getting him immunized as any of the diseases that are normally vaccinated for could be deadly for him.  


I asked him what life expectancy was like for Caleb.  Are we looking at 10 years or 30? He said, "more like 30 than 10." But honestly we really don't have any idea.  (although I'm going to take the 30 answer!!) From other people's accounts of what their children go through I think Caleb has a very mild form of Mito.  But mito is mito and at this point there is no cure for any form of mito.  The Dr. said they are making progress every year with working on diagnosing and curing mito.  So who knows, maybe in 10 years they will have a cure! Or maybe God will just miraculously heal Caleb before then, I'd take that too!


Overall it was a good visit today.  I got to ask all my questions and the Dr. spent almost an hour with us talking about it all.  For those praying- Caleb has been spitting up more than usual this week and we are not sure why.  We are searching for an answer, but it can just stop and we would be ok with that too. :)  Thank you all again for your love, support, and comments.


Love,
Jessica

Blessings from Heaven

We got a wonderful bill in the mail a few days ago.  Yep you read that right, a wonderful bill. Remember this post back from Caleb's muscle biopsy:


 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.


A few weeks ago we received a notice from Children's that insurance hadn't paid yet.  But what was interesting was that the total amount from the hospital was only $11,500.  (they originally told us it would be $14,500) I knew our current (but not for long!) insurance takes FOREVER to pay on claims so I wasn't worried, but was excited that it was $3,000 cheaper than they had quoted.  Well on Wednesday I received "the dreaded bill." (Although it wasn't that dreaded actually, more on that in a moment) I opened it and it had our final total at the bottom.  Take a wild guess how much? For an $11,500 surgery that our insurance only paid $1,100 on, we now owe $350.  Yep you read that right, three hundred and fifty dollars!!!!!!


How in the world did this happen you might ask?  Well I guess it's the insanity of insurance and hospitals.  See our insurance really only did pay $1,100.  And the rest was "adjusted."  So our total part is actually $400, (minus the $50 we paid on the day of the surgery) which leaves $350.  (I'm sure you probably could have done that math on your own...) How ridiculous right?? 


Now about that thought of the "not so dreaded bill."  From the beginning we have put our hope and trust in God.  Hope that He will heal our son, and trust that He will carry us until that happens.  There have been lots of things over the last 8 months that are little signs that He is watching out for us and providing all we need.  A $600 eye doctor bill that we only had to pay $20. Getting into Scottish Rite within a month.  Expedited appointments and entry into ECI. Getting a diagnosis within 4 months.  Amazing financial gifts from some incredible families (you know who you are!!). At the close of this year we were finally getting all sorts of bills from the "summer of searching" and had it not been for some Divine Providence we would be in a pretty tight spot now. (Not to mention trying to juggle 8 different payment plans!)  But God provided and we were able to pay off all of those bills from last year and even have money in the bank to pay off the hospital portion of the surgery!! We do have other bills still coming in from previous doctor visits, the surgeon, and the university that did the testing on the muscle, but I'll take it one miracle at a time.  Whether God chooses to write off the bill, or provide the money to pay it, He is showing Himself faithful to us!


We have our follow up visit with the specialist tomorrow and they have the results from the muscle biopsy.  I will of course share what we find out.  We are interested to see if they were able to get any answers, but also to find out what normal looks like for us.  Will we have 2 appointments a year with full blood work ups or what?  That's kinda what I'm thinking might happen but since I really have no idea I guess we will find out tomorrow.  


Oh, and one other thing, we are changing insurance companies.  Our current one would not let us add Jordyn and it only pays $1500 a year total for any doctors visits and lab work.  Caleb maxed out a whole year in 1 visit! So even though the network came through for us with the hospital portion of the surgery, we are getting some better coverage.  It has a much higher deductible (which I'm a little scared of) but I don't think it can be any worse than what we have right now! It's also $200 more a month which I'm a little scared of too.  We really don't have a lot of wiggle room as it is and that takes a chunk of that room away.  And yet, my hope is in God my salvation and my song. We aren't worried (most days) because he will make a way. Thank you to each of you who have prayed and are praying.  Thank you to everyone who has given us money for Caleb's expenses.  I am blown away by all the support.  Thank you thank you!! 


Love to you all!
Jessica

Our Homestead Happenings

So this is not a post about Caleb's medical condition.  And I'm hoping it won't be an emotional one about said condition. :) Just wanted to mention a few things going on, and maybe even talk about my other children! (shocker!)

We got the opportunity to travel over Christmas and see all of my extended family up north.  (Michigan and Illinois) We didn't go last year so it was great to be able to see everyone.  Of course we had to drive, ROAD TRIP! So that was quite the adventure with 3 little ones.  Allison had lots of crafts and games to work on.  Her dry erase supplies were a lifesaver! Caleb was very content just playing with one toy at a time and since we received a double screen DVD player for Christmas that took care of a lot of the entertaining too! Jordyn was not a big fan of traveling and the trip up there was kinda rough for me because of that.  But by the trip home she was an old pro and I even got to read a couple hundred pages in a book!! Sweet!  Jason drove almost the whole way there and back.

Grandpa and his grandson

Allison decorating the tree

After Dad's 1/2 Marathon

Family Christmas 2011

Big Helper

Sisters

Opening Presents

Repunzel and her hair!

Her very FIRST movie theater experience!

Great Grandma Syswerda

Great Grandpa Syswerda

I would say the most challenging part of the trip was all 5 of us sleeping in the same room for almost 2 weeks! Jordyn still woke up twice a night to eat, Caleb woke up and cried and then went back to sleep 2-3 times a night, and Allison was up as soon as she heard a noise in the morning.  But other than that it was a great trip! :)

I'm giving myself some grace concerning picture taking.  With 3 little ones I didn't really take very many pictures. I didn't get ANY pictures in Illinois! (really bummed) so Aunt Joanne or Sarah if you are reading this will you send me some? :)

Since we have been home we have been busy getting our garden ready for spring.  Jason has done a wonderful job in this area! I am so thankful :) I have really enjoyed starting to grow our own food.  I can't wait to continue to expand our horizons this year in this area.

Jordyn is growing like a weed! She is so awesome, we are so blessed to have her! She smiles and laughs all the time and is a pro at rolling over.  She started squealing a few weeks ago and this week she has started growling.  It's so funny! Her and Caleb both sound the same when they cry and it throws me for a loop sometimes.  She has also discovered her love of toys recently.  I introduced her to Sophie and she gnaws on her quite well! Jordyn love to chew on other people hands and can even hurt when she gets going.  She is still waking up once at night and again early morning (not a big fan) but I don't hate it too much. :) I cherish the time I am able to do this with her since I know it won't be much longer and she is probably our last.

Well here I go....Since meeting with the specialist in October and hearing him say we shouldn't have any more kids I have vacillated many times about not being ready to be done having kids and excited to start a new chapter in our family.  There are many times throughout my day when I am quite sure I can't handle any more, but then wonder if in a few years one more wouldn't be so bad.  I have kept all the kids baby clothes and all of the equipment for subsequent kids, but am now starting to let go.  Starting to empty tubs of clothes, starting to empty closets, and corners of the garage  feels so good!!  So while I'm still not ready to say we are for sure done having kids, I might be getting there. :)

Allison cracks me up all the time with her words and body language.  She is 3 going on 14! Some days it a battle of the wills but over all she is a wonderful helper and such a smart amazing kid! She is getting more independent, playing up in her room by herself.  Counting her money, looking at books, or playing with her dolls.  She still LOVES to be outside and since we have had a really mild winter she hasn't been disappointed.  She never wears shoes or socks around the house and prefers short sleeves and a skirt.  She still loves/smothers her baby sister whenever I am not looking and pushes the dogs out of the way whenever she walks by them.  (so funny)

Last bit of info.  Caleb has started to really communicate this week.  It started on Monday when he told me he wanted to go show Jason a toy dog he was holding.  It came out like this, "Dad, dog." But I knew that's what he wanted.  Each day he has told me something and I can tell he has turned the corner on his communication.  He has understood what we are saying for quite a while, but now he is talking back.  The funniest thing was him telling me that Mamaw is sleeping.  She was taking a nap on our couch and when he saw her he said, "Ma, leep"  I have never heard him say sleep so it took me a minute to figure it out.  He is always so excited when we understand what he is saying.  It's so cute! Tonight he held out his sandwich and said, "do!" He wanted me to feed it to him, me to "do" it.  I'm loving this! (however not the times when I have NO IDEA what he is saying because he has 15 things that start with an M sound)

We have an appointment with the specialist at Children's next week and we are hoping for some results from the muscle biopsy.  That and just to find out where we go from here.  I have no idea what "normal" will look like for us regarding appointments and tests and so forth, so hopefully we can get some of that answered as well. Ok folks, that's it for now!

Love,