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12.30.2009

new fav pics of my big man

Sometimes it's hard to get him in action cause he is so fast! I got a number of great ones....thought I would share.
















12.26.2009

Info and more pics...

Again, thank you to all who have followed our famiy and kept us in your thoughts and prayers. I feel like I can't say that enough.

I just wanted to share some updates for those of you who may have just started to follow our family.

October was the diagnosis month. If you want to read about it you can click on October.

Our cousin and her husband, Kalie and Robert, have worked really hard and put tons of time into a website for us. There is information regarding Sanfilippo and we also just added bio's for Jayden and Brooklyn and got paypal set up. Thanks again, guys!









Jayden's new bounce house!













Brooklyn and her cousin, Lucy













The family









Jayden, Lucy, and Brooklyn









Jayden at his preschool winter concert (singing a Happy Kawanza song!)

12.25.2009

Disney

Well...we made it back from Disney is one piece...barely. We knew going into this trip that it was going to be a difficult time, and it was.

RECAP:
Tuesday
we left via limo for o'hare and Jayden and Brooklyn did great on the plane! We got to Coronado Springs and settled in. We checked out the grounds and had dinner. The weather was warm....the only day we can say that.

Wednesday
we went to Magic Kingdom and followed Pastor Joe's detailed itinerary. Jayden, Brooklyn, and I did Dumbo, we all did small world (yes, even Chad and Tyler!) and of course, we did space mountain (not Jayden or Brooklyn!). It was a busy day and the kids did great. We even saw the fireworks show at the end.

Thursday
was a downtown disney day. We shopped and Jayden rode the choo choo train and Brooklyn posed next to the princesses. Later that night, we had dinner with our dear friends, Kelly and Jake, who were also attending the conference.
After, we headed to the first session of the night. It was hard. We were submerged into MPSIIIA....name tags and all. We went into a room with other parents (and kids) living with Sanfilippo. It was challenging to see other kids who have progressed further in wheelchairs, some were making noises, twitching, some with severe mental special needs. Two other moms proudly showed pictures of their sweet children that have gone to heaven. And there we were. Kelly, Jake, Jut and I....shell shocked as words of feeding tubes and home modifications, IEP's, and prescription drugs danced in the air. We later met some of the parents I communicated with when we first got the diagnosis. They were wonderful. I am going to try to remain positive about things, so the best thing was meeting the other Sanfilippo kids and parents.

Friday
was the full day of the conference. Jayden and Brooklyn went with Ama, Bubba, Chad and Tyler for the day. (Thank you for taking them!) I know they had fun. J went swimming and Ama even did our laundry. I which I could report the day was better. The conference just was not good. We didn't learn anything...in fact, it was more despair than hope. Again, connecting with other parents was really the best part.
We later joined the family at Planet Hollywood for dinner and celebrated Kelly's birthday. That was the highlight for Friday.

Saturday
was Hollywood Studios. Jayden loved the playhouse disney show and even met Handy Manny! He was a bit scared though. We also did tower of terror and rockin roller coaster. Favorite part? The Christmas lights show.

Later that night Jut and Jay went to the hotel pool. J took off running and fell, bumping his head on the concrete and scratching his face under his nose. We thought everything was fine but he woke up the next morning and was stumbling all over. He threw up as we were waiting for the ambulance to come get us. We thought he maybe got a concussion...

Sunday
morning was spent in the ER getting a CT scan. Joan texted everyone and you all began to pray. The CT scan came back normal and we left by noon with no answers. They thought he may have moved the fluid in his ears, causing a balance problem which made him nauseous. I have to tell you now, that I felt broken and defeated. Jut and I feel so fragile. The littlest thing sets us off into this overwhelming feeling of brokenness and helplessness.
We attempted to do epcot when we got back cause J was feeling ok. Bad choice. I ended up carrying J back from Mexico to the bus, and later took a 3 hour nap with him. Oh yeah, did I mention I had a head cold?!

Monday.
By now we were ready to come home. We spent the morning at Downtown Disney and headed back to the airport. The flight was good....not as good as the flight down. Oh yeah, did I mention we think Brooklyn has Croup? Just another thing.....

So, a hard trip.

If you are wondering why Christmas morning I am up so early writing a blog, it is not because "Santa" is putting Christmas presents under the tree, it is because I have been helping Jut get 3 inches of water out of our basement since 5 this morning and we just finished. We are idiots and j got a huge bounce house from the entire Boyce family so last night, we unplugged the sump pump to test it out and forgot to plug it back in.

I know.

Well, Merry Christmas. We hope you are having a better one than us!
Jut made a great point last night. It is so easy right now for us to get worked up about all our problems...we are standing in quick sand. But Christmas isn't about us. It is about Jesus. We celebrate his birth and rejoice He alone is the savior. he alone is the only thing saving us. Although that is getting harder for me to see in the moments, I still know it's true.














































































































































12.06.2009

some sweet things..

the last few weeks I have been bad at updating the blog....here are just a few snapshots of sweet things that people have done for us...

Jill made us a turkey from tracing our hands
Our Beach Bible Family covered our home in prayer
The girls took me out for an evening of fun





















some pics...
















our new website

A huge thanks to Justin's cousin, Kalie, and her husband, Robert! When everything happened in October, they contacted us and offered to create a website and handle donations. We knew that this was a great thing to do, but knew we didn't have the ability, physically and emotionally, to even begin to think about creating and maintaining a website, let alone donations. We never thought we would be a family that needed financial assistance. However, it looks like that is sort of part of being "missionaries in Holland" (for those of you who know the poem Experiencing Holland). We have received many blessings already and can't even imagine asking for more support.

Kalie and Robert have gone above and beyond and anticipated our needs, thus, creating a beautiful website that articulates our needs exactly and we can't thank them enough! I have dropped to ball with helping them with everything...and they have been so patient!

They even made us fancy business cards to hand out! What a fabulous blessing to us! Please take a moment to check out their hard work. You can also access our blog through the website so now you can just visit this link.

We love you Kalie and Robert! And...I will try my best to finish everything before DISNEY!

www.buildwiththeboyces.com

11.22.2009

Mighty indeed!

This week has been a bit of a ride emotionally for me. On Thursday, I celebrated my 29th birthday. Weird. I struggled to be "happy" that it was a day to celebrate me! In the past, I couldn't think of anything better than a ME day! Now that everything happened...I just couldn't fully get into celebrating me, and instead wanted to celebrate other people and God...weird, huh?

So I started the day off going to a catalyst conference with the church staff. It was great. One of the speakers was Mike Breaux, a teaching pastor at Heartland, in Rockford. It is my new found second "home" on Sundays when I am visiting family. Anyway, he spoke on fear. Funny. The night before our friend Patti, gave me Fearless, a great book on....you guessed it....fear. After the dust settled from October, I realized I am fearful of the future for my children. So, I began reading the book the very night I got it, and loe and behold, Mike Breaux began his message quoting Fearless. So, I got a funny feeling that God was speaking to me. Then, broken a bit by the message but encouraged, there were two worship songs about to play. Earlier, the speaker who introduced Mike said that Mike had called late to change the second song to go more with his message but they were unable to change the song so the one they previously selected had to work.

You guessed it.....it was Mighty to Save. (Mighty to Save holds new significance. It was the first song Jut and I broke down at Church on our first Sunday back post diagnosis) Of course, I lost it again.

Flash forward to tonight. Tonight we had youth group and Josh invited the student's to a time of extended worship and had leaders available for student's if they wanted to pray or accept Christ. I saw Aubrey, a young lady I have been friends with for almost two years sitting there. I sat by her and prayed with her. To be honest, I was nervous. I have never led someone to the Lord. I was beating around the bush hoping she would say she just wanted prayer, or wasn't ready. But, she didn't hesitate and after talking about Jesus and the promise of heaven, she accepted Christ! I was snuggled into being content with being a seed planter....but in my brokenness, the Lord used me in mighty ways! Guess what song was playing right when I lead her to Christ?

You guessed it....Mighty to Save.
Rejoice with Angels on behalf of Aubrey with me!

The Gospel of Jesus
How You Can Know God's Love"There is a God in Heaven who loves you as you are and not as you should be."Yes... you are right... there is a God. You know that must be true. The heart of the human being longs for God, and logic demands divine existence.While everyone believes God is... most sense separation from God. We know God must be holy and good. We see ourselves as unholy and not good. We conclude that God is angry with us and we cannot know Him.Good News! This Testament of God's love is His Word to tell us that He loves us as we are. That love will save us from our sin and make us what we should be as God's children.

John 3:16"For God so loved the world, that He gave His only begotten Son, that whoever believes in Him shall not perish, but have eternal life."We hear Jesus say, "God so loved the world." God's love has no limitations. He loves "so". More than we can imagine. He loves everyone - not just some ones.

Romans 5:8 tells us that God loved us so that "when we were in our sin Christ Jesus came to die for us."Romans 3:23"for all have sinned and fall short of the glory of God,"This verse tells us that all people have sinned. We have fallen short of God's intended purpose for us. God made us to know Him.... to receive His love and to love him in return. For love to be love... for God to be God... and for humans to be humans.... God gave us a choice. We can choose to love ourselves and turn to our selfish pursuits. That is sin. In our sin we cannot know God and His love. The result of sin is that we are lost... separated from God.

Romans 6:23"For the wages of sin is death, but the free gift of God is eternal life in Christ Jesus our Lord."Wages are just payment... due reward... what one has coming because of labor. The just payment for our sin is death.Death here means spiritual insensitivity. When we are still in our sin, we have no life with God. We are alive physically but dead spiritually. If we continue in that condition, we will be separated from God for all eternity.The wages of sin is death. but God's free gift is eternal life. While wages are earned, a gift is offered... no strings attached. God says He will give us eternal life - life with Him - in the place of sin's payment of death.

How can God remain true to His holiness and forgive unholy sinners? Because Jesus, His Son, has paid the price for sin by His death on the cross.Second Corinthians 5:21 says, "He who knew no sin became sin for us, that we may be made the righteousness of God through Him."Jesus arose from the grave to conquer sin and death for all who receive Him as God's free gift.

How can you receive God's free gift of love and life?Romans 10:9-10"that if you confess with your mouth Jesus as Lord, and believe in your heart that God raised Him from the dead, you will be saved; for with the heart a person believes, resulting in righteousness, and with the mouth he confesses, resulting in salvation."A person receives God's free gift of love and life by placing faith in Jesus Christ.

To believe is simply to take God at His word. With our heart (whole believing) we believe that Jesus is God's Son who died for our sin on the cross and arose from the grave to live in us as Savior and Lord.To believe in Jesus will result in confessing that faith with one's mouth.

Do you acknowledge that your are a sinner?
Do you believe by faith that Jesus, God's Son, died for your sin on the cross?
Will you now confess Him as your Savior and Lord?

Romans 10:13"for Whoever will call on the name of the Lord will be saved."This verse says that any person who will call upon the name of Jesus, the Lord, shall be saved. To call means simply to ask in prayer. The verse does not require one to know more... do better... clean up one's life... or in any way try to add to what Jesus has done for us.

Will you now call upon Jesus to save you from your sin so that you can know God's love and forgiveness?

Pray like this: "Dear God, I confess that I am a sinner, and I am sorry. I need a Savior. I know I cannot save myself. I believe by faith that Jesus, your Son, died on the cross to be my Savior. I believe He arose from the grave to live as my Lord. I turn from my sin. I ask You, Lord Jesus, to forgive my sin and come into my heart. I trust you as my Savior and receive you as my Lord. Thank you, Jesus, for saving me."

When anyone calls on the Lord in this manner, that one is saved according to God's Word. If you pray a prayer of repentance and faith, you are saved. You have God's word on it.If you have prayed this prayer to receive Christ as your Lord and Savoir, why not record your decision to follow Jesus as follows.

Often times, a good place to write this would be inside the cover of your bible:
Believing by faith that God loves me and sent His Son, Jesus Christ, to die for my sin and arise from the grave to live in me, I, _______, do this day, ________, repent of my sin and accept Jesus Christ as my personal Lord and Savior. According to the promise of God in Romans 10:13, I have called upon His name and have His word for the assurance of my salvation.
Adapted from "The Covenant of God's Love" by Richard Jackson, Jackson Center for Evangelism, P.O. Box 99, Brownwood, Texas 76804,

11.16.2009

another day...

Another day of a new normal.
I feel like the "excitment" around our family is fading. I knew that it would. That's OK. I went back and looked at some of my blogs. I honestly think I don't remember writing some of them.

Want to hear some honest stuff?
I am scrambling. Scrambling to find order in this chaos. Something to grasp. Something that will order my life. I feel God telling me to seek Him. The prayers, encouragement, and Scripture- cards and e-mails that were sustaining me are fading and I have to pick up the pieces of my emotions and carry them more and more.
I was prepared. I knew this was coming. The momentum of the crisis is gone (survival mode) and now I am left to organize the pieces. I relate it to hurricane katrina. We all watched non-stop....and then, because we don't live there, we turned the tv off. Too painful to watch everyday. Problem is I can't turn it off. This is my life.

Don't get me wrong....I know there are huge amounts of people praying, and walking with us. People that signed up for the long haul! I love you guys so much! God provides exactly what we need at exactly the right moment. He knew that I needed a huge outpour in the beginning....like gasoline on a fire....
but to get a good fire....it is low and hot. So, right now, as the number of people changes....the few burn deeper for us.

I guess that's selfish, huh? Me me me!

So here is my plan...I want to give back. I have not even done thank yous but I think about them every day. Starting tomorrow, I am gonna pick a card/e-mail/blog comment and pray for the person who wrote it.

When I was little I sat on Santa's lap (or the weird guy at the mall) and he said, "what do you want for Christmas?" My mom says that I said, "nothing. it's better to give than receive."

Matthew 10:39 (The Message)

Jesus says-
38-39"If you don't go all the way with me, through thick and thin, you don't deserve me. If your first concern is to look after yourself, you'll never find yourself. But if you forget about yourself and look to me, you'll find both yourself and me.

Psalm 139 (The Message)
A David Psalm
1-6 God, investigate my life; get all the facts firsthand.
I'm an open book to you;
even from a distance, you know what I'm thinking.
You know when I leave and when I get back;
I'm never out of your sight.
You know everything I'm going to say
before I start the first sentence.
I look behind me and you're there,
then up ahead and you're there, too—
your reassuring presence, coming and going.
This is too much, too wonderful—
I can't take it all in!

7-12 Is there anyplace I can go to avoid your Spirit?
to be out of your sight?
If I climb to the sky, you're there!
If I go underground, you're there!
If I flew on morning's wings
to the far western horizon,
You'd find me in a minute—
you're already there waiting!
Then I said to myself, "Oh, he even sees me in the dark!
At night I'm immersed in the light!"
It's a fact: darkness isn't dark to you;
night and day, darkness and light, they're all the same to you.

13-16 Oh yes, you shaped me first inside, then out;
you formed me in my mother's womb.
I thank you, High God—you're breathtaking!
Body and soul, I am marvelously made!
I worship in adoration—what a creation!
You know me inside and out,
you know every bone in my body;
You know exactly how I was made, bit by bit,
how I was sculpted from nothing into something.
Like an open book, you watched me grow from conception to birth;
all the stages of my life were spread out before you,
The days of my life all prepared
before I'd even lived one day.

17-22 Your thoughts—how rare, how beautiful!
God, I'll never comprehend them!
I couldn't even begin to count them—
any more than I could count the sand of the sea.
Oh, let me rise in the morning and live always with you!

11.12.2009

Yay!

Jayden AND Brooklyn slept in their beds THE ENTIRE night!
Some pics...






11.11.2009

Who experiences the dark night?

2 blog entries for the price of one! Here is what I received in the mail and wanted to share.

Who Experiences the Dark Night
By Nancy Missler
As we saw in a previous article, the Lord allows the dark night to happen to all of His beloved children, and especially those who are the most faithful, the most loving and who want all of Him. As Revelation 3:19 says, God chastens those He loves.This night season happens to people walking with the Lord for a long time; people who love Him with all their heart, mind and soul; people who have surrendered their lives to Him; people who are obedient to Him; and, people who fear Him. Again, remember Isaiah 50:10, “Who is among you that feareth the Lord, that obeyeth the voice of his servant, that walketh in darkness and hath no light?”
Joy Dawson, a wonderful author and Bible teacher, says that if we live righteous lives, then there is an inevitability that all of us will, at one time or another, experience God’s fire (a night of faith). Therefore, the longer we walk with the Lord, the more we can anticipate this experience (if we don’t choose to surrender everything to Him). Great Christians are made by great trials. Pain, sorrow and failure are what produce men of God. Men with great dreams are often the ones who receive the greatest trials. Eternal lessons seem to require hard places. As Scripture says, the way we are made “perfect” (or whole or complete) is by suffering or by barring ourselves from sin and self (Heb. 2:10; 2 Tim. 3:12). Only by uncovering and exposing our defects, can God really heal us. First, He must take away all our external and internal supports (other than Himself), then, He can then strengthen our inner man and enable us to experience His fullness.
The dark night of the soul happens to people who have already accepted the Lord; those who have already given their lives to Him; those already filled with the Spirit; those who have already dedicated their lives to Him; those who have already asked for intimacy; and those who have already been set aside for God’s purposes of ministry.
Why Does God Send the Dark Night?
There seems to be three things that God is looking for in each of our lives: our conversion (salvation), our conviction and our consecration (sanctification).
God wants to know the full proof of us. He wants to know our real heart. Will we be obedient in all things (2 Cor. 2:9)? Will we obey Him, even when we can’t see Him or feel Him? Will we hold on to His truths even though we don’t understand what He is doing? The kind of Love that God wants from us is a love that reaches to the point of full and total surrender. Remember, to really love God means to totally give ourselves over to Him. If we are discontent with what God has allowed in our lives, it’s a sure indication that we have not completely surrendered and abandoned ourselves to Him. Just as God had to
keep testing and proving Israel, so He must continue to humble, abase and weaken us. That way, He will see if we love Him, and we will see our total inability to live without Him.
The Lord wants believers who have faith like Job, and who can say like he did, “Though You slay me, yet will I trust You.” When Job sought the Lord to know why the bad things were happening to him, he never got an answer from God. And it’s often the same with us. God only tells us that He does have a plan for our lives and even though we don’t understand what that plan is or how it is going to work out, we must trust that He always has our best in view. We must learn to rely upon Him in spite of our circumstances, in spite of our logic and in spite of our human reason. These three things are not sources for spiritual
guidance. We must trust that only God knows what is best for our lives and, therefore, whatever He allows into them He will use it for our good. Lamentations 3:33 tells us that God does not afflict us to punish us or to be mean. He does so only to accomplish the sanctification that will ultimately bring us abundant Life.
Without such a night season, however, very few of us would ever consent to the refining process God must do in each of our lives. Nevertheless, because He loves us so much, He allows the “little foxes” to come so that we will come out of ourselves and into His loving arms. The bottom line is that we must lose possession of ourselves, in order that we might be fully possessed by God.
As John 12:25 says, “He that loveth [hangs on to] his life shall lose it; and he that hateth [is willing to surrender] his life in this world shall keep it unto life eternal.”
In the middle of our night season, it’s so important to remember who has sent this to us and who will get us out of it. God is the only One who knows how to “perfectly” annihilate us; He is the only One who can be our guide through this time; and He is the only One who can get us through. As Psalm 105:19-20 says, “The word of the Lord tried him” and “the King sent and loosed him.” In other words, if God sends it, then only God can get us out. God is the One who has called us and, thus, He is the only One who can perfect us and bring us into the inner chamber where He dwells. The initiative is always in God’s hands. No self-effort on our own part will ever work. Our oneness with Him will never be experienced until our soul is freed of itself and enabled to flow into God.

Goal and Purpose of the Dark Night
God’s purpose for all of His actions towards us is that Christ might be formed in us and that we might experience intimacy and fellowship with Him. God wants to purge our souls from sin and self, so that we will be open and willing to
follow Him at any cost. As we explored earlier, our will is what controls everything in our lives. God wants us to have a will that is completely yielded and at one with His own. One of the major purposes, then, of the dark night of the soul is to formulate an unshakable resolve in us, so that even if everything goes wrong in our lives and even if we can’t see or understand a thing of what God is doing, we will still choose to cling unmoveably to God. He wants us to be governed only by our choice of faith—a faith that says whether I live or
die, I choose to trust in You, not my own thoughts and emotions. God wants to produce in us a trust that can never be shaken. He is drawing us away from a life of senses and feelings and forcing us to turn to Him in naked faith (faith without
feelings). He wants us to be able to constantly say and mean, “Not my will, but Yours” and “Though You slay me, yet will I trust You.” God is teaching us, by darkening us, that all that matters in this life is knowing and loving Him. He wants us to love Him and rely upon Him regardless of what we desire,
regardless of what our intellect is saying and regardless of what we are feeling.
He wants us to be able to echo what Paul says in 2 Corinthians 4:8-11: “We are
troubled on every side, yet not distressed; we are perplexed, but not in despair; Persecuted, but not forsaken; cast down, but not destroyed; Always bearing about in the body the dying of the Lord Jesus, that the life also of Jesus might be made manifest in our body. For we who live are always delivered unto death for Jesus’ sake, that the life also of Jesus might be made manifest in our mortal flesh.” By going through the dark night season and coming out even stronger in spirit, it shows God that He alone is important. It shows Him that we have left “all” (even ourselves) to follow Him.

Joy Dawson made an awesome audio tape entitled “In the Fire,” in which she describes God’s seven purposes for allowing the night seasons in our lives. These help us tremendously in understanding God’s goals and purposes. They are:
1)To melt hard substances and produce brokenness.
2)To destroy anything in our lives that is useless.
3)To reshape us and make us pliable for more use.
4)To make us more like Jesus, who is our example.
5)To endow us with more power. “Fire, glory and power are always linked.”
6)To experience for ourselves the “fellowship of His sufferings,” and
7)To teach us how to mentor and help others, by learning more about ourselves and our own responses to the night seasons.

What do you say?

What do you say to parents of 2 children with a terminal illness? I have been thinking about that. And, as one who now fits in this category, I have learned a few things. I used to be aweful with other people when they were grieving. I asked dumb questions and then probably tried to compare it to some less than comparable experience I went through, and then maybe prayed (or forgot to pray) once for the person. I am ashamed to say that, but it's true. I am sorry. So, in light of that, I was prompted to write this.

Here are the things that really have helped us. People who have said,
"I don't understand. But I will walk through this with you. The good the bad and the ugly." And then walk it.
"Let me pray for you. Now. Together."
"I was reading this in Scripture (or I heard this song)" and then passed it along to us.
"I want to help. What do you need?" And, If you don't know I will be here when you do."

Or people who,
Just cry with us.
Laugh with us.
Are ok in the silence and don't try to find words.
Just do something they are lead to do. (meals, cards, donations, etc.) where we don't have to think about what we need. They just anticipate and do it.
Love on our kids and treat them as they "normally" would.
Really pray for us and interseed on our behalf.
Still let their kids love our kids.
Text saying, "just thinking of you now and praying for you".

Just a thought.

Acts 3:6-8 (The Message)
6-8Peter said, "I don't have a nickel to my name, but what I do have, I give you: In the name of Jesus Christ of Nazareth, walk!" He grabbed him by the right hand and pulled him up. In an instant his feet and ankles became firm. He jumped to his feet and walked.
8-10The man went into the Temple with them, walking back and forth, dancing and praising God. Everybody there saw him walking around and praising God. They recognized him as the one who sat begging at the Temple's Gate Beautiful and rubbed their eyes, astonished, scarcely believing what they were seeing.


Acts 20:34-36 (The Message)
33-35"I've never, as you so well know, had any taste for wealth or fashion. With these bare hands I took care of my own basic needs and those who worked with me. In everything I've done, I have demonstrated to you how necessary it is to work on behalf of the weak and not exploit them. You'll not likely go wrong here if you keep remembering that our Master said, 'You're far happier giving than getting.'"
36-38Then Paul went down on his knees, all of them kneeling with him, and prayed. And then a river of tears. Much clinging to Paul, not wanting to let him go. They knew they would never see him again—he had told them quite plainly. The pain cut deep. Then, bravely, they walked him down to the ship.


Romans 8:26 (The Message)
26-28Meanwhile, the moment we get tired in the waiting, God's Spirit is right alongside helping us along. If we don't know how or what to pray, it doesn't matter. He does our praying in and for us, making prayer out of our wordless sighs, our aching groans. He knows us far better than we know ourselves, knows our pregnant condition, and keeps us present before God. That's why we can be so sure that every detail in our lives of love for God is worked into something good.


1 Corinthians 16:5-7 (New Living Translation)
Paul’s Final Instructions 5 I am coming to visit you after I have been to Macedonia,[
a] for I am planning to travel through Macedonia. 6 Perhaps I will stay awhile with you, possibly all winter, and then you can send me on my way to my next destination. 7 This time I don’t want to make just a short visit and then go right on. I want to come and stay awhile, if the Lord will let me.

11.08.2009

Rockford and more...

This weekend we packed up the car and kids and took the drive to Rockford...my home turf. We were going to spend some time with Nana and Papa and our family and friends out there, but our trip also had another purpose. We were going to meet our new friends, Kelly and Jake.

Kelly was the first person I spoke to after finding out we now had a new title, "an MPS family". See, Kelly and I share something very special...an understanding of what it looks like to live and parent children with Sanfilippo. Kelly and Jake have a beautiful daughter, Livia 2 1/2, with Sanfilippo, same as Jayden and Brooklyn, and a lovely daughter, Finley 5 mo. who is a carrier but is unaffected. They live minutes from Rockford and we decided to get together for a play date and dinner. Kelly and Jake are gifts to us from God. They too, are leaning on Christ completely. They were the missing link in this whole thing for us. They have the uncanny ability to think the same thing as us. A shared experience. Not to mention they are SO FUN and COOL!

Can I just mention how adorable Livia is?! Jayden already has a crush! They played so well together and as Kelly put it, Liv doesn't know a stranger! She warmed right up to us. We played in the tent and in her kitchen...she made me noodles and Kelly let Jayden and Liv do her hair. Kelly and Jake are wonderful parents and are so amazing! Would you pray for their family too? Thank God for putting them in our lives. Thank God for their beautiful girls. Their new family phrase is LIV life. In tribute to Kelly, I added her new "anthem" to my playlist, "just fine". We get it now just in the few hours being with them and they are doing just that. Liv is hard to be around without smiling. I really think God uniquely blessed our children with the ability to light up a room with a smile. Here is another "God" thing.

They decided to go to Disney. They are going the same days, on the same airline, on the same flight down, in the same hotel!
Thanks God!
Here are some pics of our time with them.
















We also had time to spend with my mom and step-dad, Steve. It was great. Jut and Jayden worked in the yard digging holes (so you KNOW Jayden was happy!) and Brooklyn and my mom and I went shopping (so you know I was happy!) We also had family stop by during this time too so that was great! On our way out, I stopped to see my dad. During this diagnosis phase, I found out that the place my dad was living at was closing so he had to abruptly move (he's 73) and stay in a hotel for a number of days while he looked for a place. Luckily, he found a great place and I saw it today. That was a great relief cause I am really the only one he has around to take care of him. Here are some weekend pics...
















































I think I may have forgotten to update you on our appointment on last Friday at childrens. We met with the genetic counselor and doctor to discuss "what next". Basically, Jayden and Brooklyn will be monitored every 6 months, give or take, to see if they are progressing or regressing and to help us manage the disease. We have a battery of tests for Jayden moving forward to capture a "baseline" of where he is now so we have something to measure against in the future. So, over the next months we will be traveling to a number of Dr. appointments. He will be getting his hearing and vision tested, an ECHO cardiogram, a neuro. psych. eval. and possibly seeing an ENT. They are also starting him on Genistein, a supplement that is supposed to aid in slowing down the production of sugars that his body can't break down. They think it is worth a try. I guess when there is no treatment or cure, you can either do nothing or try something that may not work. Brooklyn is on it too.
Jayden is also going to get evaluated for an update to his IEP that will include physical/occupational therapy. He is currently attending preschool through our school district and goes every morning (on the bus) to an inclusion class. He also gets speech and special ed. We have really been pleased with all the services and the way the teachers love Jayden. It was a rough first month getting everything we needed but now we are all on the same page. Jayden got his first report card and we had our first parent teacher conference. They said Jayden is doing great. He is progressing and getting the classroom routine down great. He loves all the sensory things like a table they fill with sand and water, finger painting and art projects. He also loves playing in the "housekeeping" area. He gets a purse, stroller, baby and walks around the room talking to "my dada" on the phone!
Brooklyn is starting Early intervention with the state this next month to help her hit her developmental milestones. So, I think we are on the right track.

Here are some of our prayer requests:
Jayden tests great on all his testing and it goes smooth
Brooklyn gets great therapists that will help her meet her milestones
Peace in our home and energy
an Eternal perspective
People will see Christ through our situation and draw near to him
Clarity and direction for selling our house and adding to our family
Sleep
Moments to enjoy our children
Direction regarding donations and our financial situation
Fun at Disney and compassion as we meet kids and families further down the road with Sanfilippo
Our new "normal"
Treatment and a Cure/ His will be done
Our new MPS friends Kelly, Jake, Livia, and Finley
Praise for you...and our entire body of Christ
Overall, we are hanging in ther. I got some rest and we are finding more moments when we are not thinking just about MPS. That's good. I think it is hitting me that this is just the beginning orf a long, hard, rewarding, blessed, difficult journey....not the end. Thank you for continuing to follow our journey and supporting us in every way! YOU are AMAZING!!!
We can't do this without you!
Let’s be joyful in hope, patient in affliction, faithful in prayer. (Romans 12:12). Let’s be still. (Ps. 37:7). Let’s love life. (Ps. 34:2) Let’s sing of his love. (Ps. 59:16) Let’s give thanks. (Ps. 136:26). Let’s fear the Lord. (Prov. 28:14) Let’s think about good things, noble things. (Phil 4:8) Let’s settle matters quickly. (Matt. 5:25) Let’s set our hearts on things above. (Col 3:2) Let’s show integrity. (Titus 2:7) Let’s be gentle with our words. (Prov 15:1) Let’s be completely humble. (Eph 4:2) Let’s try to be kind. (1 Thess. 5:15) Let’s be compassionate. (Col. 3:12) Let’s encourage eachother today. (Heb. 3:13) Let’s live a life of love today. (Eph 5:2) (-Thanks Jodelle!)