Halloween 2011 & An Update

As you can tell Matthew enjoyed his Halloween, each year it gets better and better.  He loves doing things by himself and he likes to help out too.  Bradley and he had a good time making Halloween cookies the easy way and it also made Matthew feel like he done it all by himself.  He's maturing by leaps and bounds, we're so proud of him.  My grandma had to have a little talk with him about wearing his costume, I don't know what she said but it worked, he kept his Indian feathers on the whole night.

And then there's this side of the preschool years that I'm thankful for but yet I'm pulling my hair out!  Especially while going through my third trimester of pregnancy.  Matthew is at a stage now where he's doing things on purpose, like refusing to clean his plate or eat, peeing in the floor on purpose besides going to the bathroom or for goodness sake go outside.  He is ALL boy!!  His speech is getting much, much better.  Everything is still no or he either mocks what we say.  Counting and time out is getting to the point where it's not working now and we're having to resort to taking away his toys, which is working for now.  Matthew however is completely potty trained at school he can even pull his pants and underwear up and down by himself now. His walking is better now without the braces than with them and he's starting to run everywhere.  He still struggles a bit with the steps but we're more comfortable with him going up and down them without us near so we've taken down the baby gate for now.
Speaking of baby, little Miss Madison's prenatal MRI for Jourbert's Syndrome came back normal with no molar tooth sign-Praise God!!  Her CPC in the brain have now resolved also ( fluid cysts in the front part of the brain), she's weighing in about 2-2 and 1/2 pounds now. 
Matthew just has gotten over Fifth disease at school which left me in a mad rush to my OB- thank goodness I'm immune and it doesn't effect the baby. 
All in all we're enjoying God's blessing and Bradley is doing well after his hernia operation.  :)

Have a great Thanksgiving everyone!
Love,
The Marshalls

Matthew's First School Year



Matthew has now made the transition into the school system, YIPPEE!!!  I should be nervous but Bradley and I took time to meet with the school advisers and we interviewed our options of school and teachers, and we had our choice of school.  We chose to put him close to where I work and Ms. Penny, his teacher is AWESOME and our neighbor,  Rebecca is the Kindergarten teacher.  So everything is a plus.

Matthew LOVES to ride the school bus.  This is a picture of his first day on the bus, as you can see he needed a little assistance.  However, now he can get on the bus and into his seat and off of the bus all by himself.  He still needs help with that first step because of his short legs.  He is now ready to start potty training at school and is finally doing good at home now.  The only problem now is that he knows if he tinkles in his big boy underwear he gets to change them and his new found joy is taking off his clothes and his underwear.  I am so thankful for this part, he still needs a little help but does it majority of the time by himself.  He is definitely Mr. Independent.

While in school, Matthew's preschool class consists of 18 kids, all boys.  They also have their own speech therapist and his teacher focuses alot on speech.  So he gets speech everyday and 2 days with a one on one speech therapist.  His words have came by leaps and bounds.  He now has 250-300 words, he can say 3-4 word sentences, but still mostly uses two word sentences.  He repeats everything Bradley and I say.  He can say his body parts and names colors, he can say part of his ABCs and count to 6.  It's AMAZING!!!!!!!!!!!!!!!!!!!!  His articulation is still off some but getting better.  He gets homework once a week that consists of 4 sight words with pictures where he has to name the picture and point to the word and say, he now has it memorized.  He somewhat enjoys homework but I have a feeling he's going to be like Bradley when it comes to school work.

Matthew has been truly touched by God, he is a darling little miracle and Bradley and I cherish every moment with him.. He just recently had his yearly scans at Baptist and all tests came back better than normal. (Thank You God!)  He even peed in the cup so we didn't have to put the horrible urine bag on him.  

Bradley and I are definitely enjoying watching Matthew grow and mature but miss him being a baby, but that's what kids do, GROW UP and get ATTITUDE.  Matthew's new favorite word to everything is "NO!" 

Happy 3rd Birthday Matthew!

It's so hard to believe that my baby boy is now 3.  Time does fly by so fast.  Matthew has grown and matured this past year in amazing ways, ways that we weren't sure of course would happen.  Here are a few of Matthew's milestones he's accomplished by 3.

1. He walks with a more heel to toe motion and can pretty much keep up without losing his balance.
2. He can say 2- 3 word sentences, still not too clear but clear enough for us and can sing some parts of his fav.songs.
3. Can do most wooden peg puzzles all by himself  & matching all the picts. correctly give at least 10 items to choose from.
4. Recognizes the spelling of his name and he can pretty much hold a pencil correctly now.
5. Can go up and down stairs unassisted but still takes one step at a time.
6. Can operate most mechanical toys.
7. Can follow a 3 part instruction most of the time.
8. Loves to pretend play and help mommy and daddy out around the house.
9. Pretty much stays dry through out the day and will willingly use the potty or pee outside. (until pregnancy occurred)
10. Has started to make friends.

So as you can see our little toddler is growing up.  This year will mark new adventures for Matthew and we're sure he'll continue to grow even more.

Below is a slideshow of Matthew's party.

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JS Conf. 2011/Vacation

Well we've made it back from Orlando and now time to play catch up.  We attended the Joubert Syndrome Conf. for two days and then decided just to spend the rest of the time vacating.  The conference was ok, we met lots of other families and their kids.  We are truly blessed with little Matthew and all the things he can do and say.  Parents, never take your kids and their abilities for granted.  Each child no matter how they are made are truly a little miracle.  For parents with "special" children there are no words really to describe the patience, love and joy that these parents bring to their children's lives.  Bradley and I are glad we went, however we probably won't be going to the next one.  The downside to the conference was the sessions, we got more out of going to NIH than these sessions.  In part I think because at NIH it was more one on one.   However, we met some amazing families (35 total) who gave helpful advise about school, etc.

Now time to vacation picts.  We took Matthew to "Magic Kingdom" and he LOVED IT!!!  We will definitely be going back. Hope you enjoy the picts.



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The night show was the best along with the fireworks.

Food Poisioning

So, let me get to what I said in my earlier post that, "I'd explain later" bit.  Bradley and I have had alot going on these past few months which will explain why my break in blogging.  First, we had Matthew's school evaluation to go through and fight for what therapies we felt he needed and he also started a new preschool for the summer which we LOVE.

Second, we're working on adding onto our house which is too greatly needed.  The economy sucks by the way if you haven't already figured that out which makes borrowing money like an act of congress.  But finally we've prevailed after 3 long months, we will be starting on our house in a couple of weeks which as you soon will find out is a God send.

Third, preparing for Vacation Bible School and working in the garden, canning greenbeans, etc.  Is very, very exhausting.

And now to our wonderful story of "Food Poisoning"  The week before Bible School, I barely made it home, I was so sick.  I called Bradley and he was just as sick as I was.  Food Poisoning as I thought is HORRIBLE, but that wasn't it at all.  After a few ours of this sickness not letting up, I got to thinking, I just wonder, but knew there was no way.  SO I THOUGHT!!!!!!!

YEP, you're looking at it right, we're going to have a baby!!!  What a surprise, Bradley and I had somewhat been trying for the past couple of months but when Matthew came down with the "Hand, Foot, Mouth Disease" from school  we didn't try, so I thought.  Anyway, what we thought would take a 1yr or more like it did with Matthew, took less than 3 months. 

God is so gracious to us when we least expect it.  This time around I've not had to take any hormone meds to get pregnant or to keep from miscarrying.  I just have to take a nausea medicine only when needed and of course the prenatal.  We went for our first ultrasound this past week when I think it hit us that we're really having another baby.  We're due Feb. 15th.  Valentine's Baby.  Heart this week was 167 which is really really good.

Please, please continue us in your prayers, with Matthew having Joubert Syndrome we have a 25% chance of it reoccurring.  We have to go through more blood work and ultrasounds and a prenatal MRI.  This is kinda scary not knowing but FAITH is a remarkable thing.  I know in my heart that if this little one wasn't suppose to be here and have a purpose then God wouldn't have allowed it. 

Please pray that God with bless us with a strong and healthy baby.

VBS 2011

What a busy summer this has been, with preparing for next year's school year and then Vacation Bible School was just about too much for me, along with other things.  (I'll explain later)
Each year VBS becomes somewhat unpredictable for our little church, this year God blessed us with LOTS of 2 and 3 year olds I guess you can imagine that attention span.

Matthew seems to enjoy VBS more and more each year and he's improving so much with moving around with his peers.

Matthew loved the games and the crafts and of course he liked being center of attention.

Matthew is now at the stage where it's "I do it" and he means all by himself too.  He's a "monkey see, monkey do".

And this is our glorious little tots that made our VBS a huge success.  This VBS has taught us that next year's will be a one day event until they get a little older to handle everyday.
God is still so good, he provided everything we needed along with the patience and wisdom us adults so desperately need sometimes.

Tweetsie Railroad

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Melt Down

Yes we have reached a high point in temper tantrums here lately and I'm hoping this is just a phase and nothing more.  Matthew has now finished up his season of gymnastics and we're done for the summer.  Needless to say though Matthew didn't want to co-operate during the closing ceremony where he received his metal, all he wanted to do is play the "freeze" game.  (which is similar to musical chairs)
Above is Matthew and his teacher, Heather, as she gives Matthew his medal.  She was super through these past few months with helping me get him involved in moving and trying new things.  We of course still had to bribe him some with their vacuum there at the gym.  I know we're terrible and you're not suppose to do that but you show me a parent who hasn't.
Anyway,  Matthew has been having alot more tantrums here lately impart because he does have some trouble communicating and some of it just has to do with being 2yrs old.

This is just the beginning of the "Melt Down", trust me it gets better.  Poor little thing he pooped in his big boy underwear yesterday and couldn't stand it and had a terrible tantrum.  It was so bad his umbilical hernia poked out because he cried so much.  I'm going to have to keep a check on it and mention it to his pediatrician. 

And this is the final stage of the "Melt Down"  he didn't want to have anything to do with his medal, but this too was priceless.  Can't you see the fiery temper beneath those red curls.  He's so cute even if he is mad.

Now there is some good news in this "melt down" of a week, Matthew is pretty much officially potty trained, he has now started telling (showing) me he has to go to the bathroom, by grabbing himself or crossing his legs.  He is also staying dry from his naps and about every two hours.  I'm so relieved, we still have a few accidents but that's ok.  He loves peeing outside.  he's so funny.

Stressful Decisions

Well it's been a while since I've updated you on how Matthew's doing and what challenges we've been facing.  We've had two of our yearly appointments that are required for Joubert patients.  The first, our neurologist, he was very impressed with Matthew's progress, his balance is pretty much stable and his walking is just a tad abnormal due to the gait issue and the AFOs.  However, he did diagnosis Matthew with a mild speech apraxia, Matthew has about 125 spoken words and can put two words together and can say a three to four word sentence, which the only sentence is "Mommy, I want........  This I do count as a HUGE blessing, as where only half of Joubert kids don't talk until the age of 4.  Our neurologist also noticed that Matthew has trouble tracking things, he can track it but not at the rate of speed that it should be, so therefore, reading will be an issue we face.  Mentally, Matthew is age appropriate along with the age appropriate behaviors, etc.  We did ask the doctor about Matthew's someone jerky and tense movements, he only does these when he gets excited, bored or sleepy.  We were thinking, ataxia but to our relief it's more so a BAD habit.  

Appointment #2, was to our geneticist at Baptist, which I dreaded most of all.  I prayed and prayed the night before that God will make this appointment and blessing, not only for us but for our doctor too.  (Reminder, our geneticist was not one bit optimistic with us last yr at this time.)  To no surprise when you pray for God's help and his intervention it most always works.  Not only was Dr. Jewett very, very impressed with Matthew she's very optimistic about his health.  She did suggest we do the scans yearly instead of every two years, which I agreed too.  Matthew of course had a stomach bug when we went and didn't feel good but he did let the doctor know that the appt. was over when he shook her hand got down off my lap, ran to the door, opened the door and told her, "bye".  Now that's my little Matthew.  God is so good!!!

We've also been working on potty training, Matthew has had no trouble peeing and pooping in the potty so I decided enough of pull ups he needs to learn to control his bladder.  So as of "Good Friday" we've been in big boy underwear at home. His school says he's not ready and it's to much for the teacher with 9 other kids.  (that's another issue for another time.) After the first couple of days he got the hang of it.  So far I have to change him about 3 times a day and that's just because he's too focused on playing.  He's so cute in his little under roos.  

  

Now to the stressful decisions,  Matthew last week had his school assessment since he's about to age out of the Early Intervention program.  He, I think done very well, but I'm afraid too well to qualify for everyday at school.  I've asked for everyday but I'm afraid I'm going to have to fight for it.  I know he'll get in for the speech.  Matthew also has two choices of schools he can attend, which is the biggy.  They're both good schools with GREAT teachers, one I can easily get after school care and the other one will be closer to me at work.  I've been sitting in at both schools in the classes that Matthew will be in and I'm going one more time just to be sure I get a good feel.  Pray that I make the right choice and that Matthew can go everyday to school.
Our other BIG Financial decision is we're getting ready to add on to our house and trying to juggle when we could start the build with vacation and VBS and Matthew's birthday coming up, and schooling and trying to have another baby is sometimes all too much for my brain to handle.  (yes, you heard right, another BABY)

Decisions though, rather big or small take some time to make and some true guidance from God.  This has been a learned lesson for me these past couple of weeks and months.  I'm always the one making the decision right then and it bugs me like crazy when someone can't make up there mind.  We'll my punishment has now been taken, never again will I complain about someone taking too long to make a decision because it can truly, truly affect you, mind, body and soul.

Team Work

Yep, it's that time of year again, Baseball!!!  For our family though it's a little game of T-Ball.  My nephew, Nathan, has somewhat decided to play for the first time.  The first game was a learning curve for him and my sister.  Nathan would cry and come off the field every time when he couldn't get the ball and another kid got it.  The game of T-Ball is truly teaching him the meaning of Team work.

Thought this was a cute picture, notice the little girl in her pink sundress, she REFUSED to put her uniform on so she made the game a little more GIRLY.

Matthew enjoys watching Nathan play,  When Matthew sees Nathan playing ball, he thinks he's suppose to also.  I then have to start all over again trying to explain to Matthew how come he can't play yet.  The first game I spent most of that time trying to keep Matthew out of the dugout instead of watching the game.

This is our neighbor Jason, he and our other neighbor Graylyn have took on the role of coaching the Nancy Reynolds Dragons, which will be Matthew's team.  They done a really good job.  Of course we had to sit on the opposing side.  (Bloods thicker than water)

The little slugger himself.

As tradition has it all team players line up to give high fives and say "good game".  The good thing about T-Ball though, EVERYONE WINS!!!!!!!

Easter Blessings

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Chef Marshall

Chef Marshall decided he wanted to help mom make home-made pizzas Monday night.  He LOVES using the rolling pin.  After showing him how to roll out one pizza he done the rest all by himself.  He's so smart and so sweet!!!  AND THEN THE BOOBOO!  I'll let the pictures explain.  It's a before and after but so cute I just had to share.

(Before)

(After)

Too Cute, he's a little red headed version of Tom Seleck!!:) Hahaha.

Easter Celebrations!

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HUSBANDS....UGGGGGG!!!!!!!!!!!!!!!!!!!

I'll give you just a few minutes to really look at this picture and to think about how this happened.



Minutes up-  Bradley of all things decided to tote Matthew downstairs instead of making him walk downstairs like he suppose to. (part of his therapy) decided to FALL with Matthew in his arms down the steps.  Matthew of course hits his head and his eye on the steps, thank God they were carpeted.  So off we go to JR Jones.  Thank goodness I knew the PA so she took us right on in. 
This picture doesn't do it justcie, Matthew's eye was actually almost swollen shut last night when this happened.  The PA cleaned around his eye and examined his pupil and his vision and gave us instructions to wake him every 2-3 hours and ask him questions just to be sure he is still coherent, which made for a long night.
After 2hrs there and a $150 copay, we came home with a minor black eye and a HUGE carpet burn above the eye and on the eyelid. 
You wonder why such an emergency, the eye Matthew blackened is the eye that has the small cyst on the pupil so needless to say I rather be safe than sorry.

Boys and Gymnastics

Yep, you read it right, GYMNASTICS.  Since hippotherapy didn't pan out we've tried something new and to my surprise Matthew somewhat enjoys it.  It takes him a little bit to warm up to the class but once all the other kids get going so does he.

Matthew can actually do this balance beam with one foot on it and one foot on the floor, which isn't bad for his age.  At this session he wanted to do it with both feet so he needed a little help.

At this session was "Bring A Friend"day.  So we brought cousin, Nathan.

Just to think, two years ago doctors said that Matthew wouldn't be able to walk, talk,etc.  I guess they didn't have this in mind either.  If you don't believe in the power of prayer, let me just REMIND you, see the picture above, this is God at work.
To all those parents dealing with the unbearable daily challenges of raising a "special needs" child, please, please remember you're not alone in this HUGE task.  GOD IS THERE, he may be in the shadows but he's ALWAYS there.  He has given us a trusted gift that he wouldn't just give to anyone, he's given us these precious children that he knows we will cherish and look to Him for strength, guidance and patience to raise His children for His service.  What an honour.

Reuniting

Isn't it beautiful, we just got back from the beach visiting some friends.  A group from church decided to take off a weekend for a little r-n-r and to do a little reuniting.

Matthew hasn't seen David and Jean since his first birthday, he was right at home.  It took him a little bit to warm up to their dog though.  Below are a few of our group pictures.

(Janelle, Mom, Allene)

(Me, Mom, Allene)

And of course, being a toddler, you have to play in the sand no matter how cold and windy.  Yes it was cold and windy, the sand stung as it hit your skin.  You couldn't tell by looking at Matthew though.

I think Matthew's occupation/profession might be a "chef", yes a chef, he will honestly eat anything and I mean anything.  His favorite dish at supper was of all things, cold slaw, he ate so much of it I just knew it was going to make his belly hurt.

If you've never been to a church service (Southern Baptist) in the south, especially on the coast, YOU NEED TO ATTEND ONE!!!!!!!!!!!  Sunday morning we went to a little church, reminded me of our church here at home.  Bolivia Baptist, the music was GREAT and the sermon was AWESOME. 
However, Matthew by all means and of all the times decided to be a little boy and crawl under the pews, race his race cars on top of the pews and the kicker---- tried to do a somersault in the floor. (I'll explain this later) Talk about driving my patience mad, my goodness.  It was so bad that one of the ladies in the church came and asked me if she could take him to the nursery.  Once to the nursery, he was everywhere being Mr. Nosey.
Knowing my blood pressure was probably raised a little bit that Sunday, I have to tell you that I am so so Grateful to God that Matthew is able to act like a little boy and do all the things that little boys do.  He's God's perfect little angel.

I saved the best for last.  Before leaving our hotel, Mom and Matthew found a new ride.  This is the new "train".  Matthew has been into Thomas the Tank Engine here lateley.  Isn't he adorable!!!