May 31, 2011

Photos of the Month: May 2011

Aaron was gone for few days in May to Parris Island for a Marine recruiting program. No, he's not joining the Marines. Aaron was there to learn, observe, and even experience many parts about Marine boot camp and Marine life. This program was set up for educators so they could return and share their observations with others (in hopes that it would spark an interest to join). You'll have to ask Aaron about it sometime. He has a lot of interesting stories (he experienced the "yellow footprints", learned to march, fired some weapons, and much more...). Aaron brought back with him a couple little toy planes and Grant loved them. It was fun to hear Grant walk around the house making his version of airplane noises.

The boys, with Daddy's help, made Mother's Day cards. 

Love those little hand-prints!

Lately, when Grant wakes up from his nap, he asks for an apple and enjoys eating it while looking outside.

Grandpa Mayes introduced golf to Grant and he really took to it. I can see it now,  the first PGA Pro with Fragile X Syndrome! :) Now we just have to find a way to get Grant some golf lessons...

 We brought out the sprinkler and Grant had a great time with it.

 Wesley wasn't too sure about the sprinkler. So cold!

 Rain, rain! May was a rainy month but it was great for the lawn, trees, and garden.

I was late in getting the garden planted but it seems to be doing well (especially with the heat we've had this past week). I can't wait for the fresh green beans, tomatoes, and green bell peppers. I haven't had much luck growing bell peppers down here but I'm trying again this year.

Aaron made a second little garden for me on the side of the house and the plants have been flourishing. I planted zucchini, squash, cucumber, and more tomatoes.

Wesley is always looking for an opportunity to dig his hands into dirt. He enjoyed watching me plant the garden this year and desperately wanted a part of the action.

 My little garden "helper".

May 26, 2011

Prayer Request: Grant's EEG

I come to you again with a request for prayer. Grant will be admitted to the hospital Tuesday morning (May 31st) for a 24-hour video EEG (electroencephalogram). While we want and need to know for sure if Grant is having seizures, I am terrified of what the truth may be. A couple of Grant's actions (or lack thereof) are suspects of silent seizures (also known as absence seizures or petit mal seizures - click here for more information about them). Grant's actions could be quirks related his autistic-like disorder, Fragile X Syndrome, but I fear that they are not and we need to know for sure.

What I know about the testing process:
  • First, electrodes will be placed all around Grant's head.
  • Then (if I understand correctly), Grant will have intense, blinking lights placed in front of his face to cause a spike in brain activity. This is done to monitor how his brain reacts and/or to see if they can cause a seizure to take place at that moment.
  • Finally, Grant and I will "camp out" in a hospital room with a video camera taping all of his movements for the remainder of the 24-hour procedure. The electrodes will be on his head the whole time to continue tracking his brain activity. It will be up to me to keep Grant preoccupied and try to maintain his normal routine as much as possible. If I see any suspicious reactions from Grant I will press a button to mark a place in the recordings for further evaluation.
That is all I know and much of that came from a mother who has been through the process with her son.

Please pray for the following:
  • ... that we can find someone to watch Wesley at our house early Wednesday morning (very, very early) while Grant's test concludes at the hospital. Aaron cannot take off from school that day - it is the first day of test for students.
  • ... for my emotional well-being. Like I said, I'm pretty nervous about what will be discovered but I, of course, want to help Grant as much as possible.
  • ... that the procedure will be successful. I would hate to go through this whole process and Grant not show any of his suspicious behaviors for the doctors to see. I want to come away from this confident that we have uncovered the truth.
  • ... that Grant is not having seizures. Approximately 20% of people with Fragile X Syndrome have epilepsy. I am hoping and praying that Grant is not one of them.
  • ... wisdom, patience, and peace for all involved.
  • ... for provisions for our needs that come with this hospitalization and test. God is the great provider!
  • ... for God to be gloried through this process!

Thank you for your love and support and prayers! I'll keep you posted. :)

I will lead the blind by ways they have not known, along unfamiliar paths I will guide them; I will turn the darkness into light before them and make the rough places smooth. These are the things I will do; I will not forsake them. Isaiah 42:16

Don't you be afraid, for I am with you. Don't be dismayed, for I am your God. I will strengthen you. Yes, I will help you. Yes, I will uphold you with the right hand of my righteousness. Isaiah 41:10

{Want to learn more about what happened that day? Read Follow up: Grant's EEG and Update: Grant's EEG Results}
My sweet, sweet Grant. A gift from above.

Photo by Elizabeth Marx
Almond Leaf Studios


May 25, 2011

Worship Wednesday: Confident in Him

Blessed is the one who trusts in the LORD,
confidence is in Him.
They will be like a
tree planted by the water
   that sends out its
roots by the stream.
does not fear when heat comes;
leaves are always green.
It has
no worries in a year of drought
never fails to bear fruit.

Jeremiah 17:7-8

Thank you, Lord, that in spite of seasons of darkness and difficulties I can rest my hope in your refreshing stream of promises. 


May 24, 2011

Therapy Tuesday: our sensory therapy room

I love our therapy room. Not only because it helps our Grant a lot but also because it reminds me of all the loving people who have surrounded us with support.  

Shortly after Grant was diagnosed with Fragile X Syndrome, Aaron's church softball team banded together in prayer and raised some money for us to purchased the equipment needed for Grant's swings. Pictured above are the attachments for Grant's swings. They allow the swings to rotate/spin smoothly and to be adjusted up or down with ease - necessary for attaching various therapy swings. The board swing, in the first picture, was another gift from the church softball team. The board swing is used so many ways it's difficult to list them all. I'll probably do an entry just on all the therapy that is done on the board swing.


Grant loves his "cuddle swing". Some days he would be in there continuously if I'd let him. When he is getting out-of-sorts, wound up, or anxious, a few minutes in the swing calms him down. Swinging is a key component to Grant's sensory diet. (Grant is doing his Therapeutic Listening Therapy while swinging.)

The trampoline was another gift from dear friends. When they heard we were looking for a little trampoline, they pulled one out of their garage and delivered it the next day. In an earlier Therapy Tuesday entry I talked about Grant passion for jumping. He is my Grant-a-roo. :)

A tunnel helps Grant's vestibular issues. Crawling through the space forces his body to orient itself and create body awareness so his arms and legs work together to get from one end to the other. This is yet another example of how Grant's body has to teach itself things that come naturally to many children. Sometimes I have Grant crawl through the tunnel while wearing his weighted vest and pushing a weighted ball. Or I place random items in the tunnel for Grant to feel and crawl over.

Pictured above are a few things I use for Grant's "heavy work" time and various obstacle courses. At the top are the medicine/weighted balls (the red is six pounds and the yellow is four pounds). The coffee containers at the top left are filled with sand (with the lids glued on). At the bottom is a silver workout disk and an orange seat cushion (for sitting on bleachers during sporting events).

Each of these items can be used in numerous ways. Just like with Grant's weighted vest and weighted blanket (see the Therapy Tuesday: Now I weigh me down), the heavy/weighted items are great input for his muscles and joints which, in turn, calms the body. When Grant gets a bit older he will have chores that encourage heavy work such as carrying the groceries in from the car for me. 

The disks are great for obstacle courses. Grant loves to walk on or crawl over them and it help teach his body balance and coordination. They also have different textures which is great for tactile input. Sometimes we'll read books while standing or sitting on a cushion.  

The scooter promotes balance and help strengthen Grant's core. Grant has hypotonia (low muscle tone) and a scooter is a fun way to work on that issue. Grant is still learning to balance while sitting on the scooter but the goal is to be able to pull him around without holding on to him. We also use an exercise ball for the same purposes.

OK. That's all for today. There are many more items I could talk about but I think I've rambled on enough for one entry. If you have any suggestions on tools that could be added to our collection or different ways you use various sensory items, please let me know. I always love a good idea!


May 16, 2011

When God says no

I still remember the first time I saw Grant. I was eight weeks pregnant. As the ultrasound technician zoomed-in on the image on the monitor, I could see something moving.

"There's your baby," the technician announced, "And there is the heart."

My eyes blinked back tears as I watched the miracle forming in my womb. In that moment I fiercely declared to myself that I would do anything for this child - my child. Every breath I breathed until he was born was filled prayers to God for a healthy baby.

A few months after Grant was born, I began to notice signs of some developmental delays. My pleas to God for healthy, "typical" child surged in intensity. During the emotional journey of locating the source of Grant's developmental problems, I begged God to shield his mind.

I would cry out to God on a daily basis, "Lord, I don't care if Grant's a little behind but please, please protect his mind."

On February 22, 2011 at 12:27pm, my phone rang and the nurse on the other end told me that Grant's Fragile X test came back "abnormal". I knew then that despite all of my crying, begging, pleading, and bargaining, God had chosen to answer my request with a no.

I was shocked. I felt abandoned and very alone. I spent the next few weeks asking "why?!?", crying myself to sleep, and battling intense jealousy of other families with "normal" children. I was hurt that God would purposefully choose to give Grant a life filled with the difficulties that come with Fragile X Syndrome. I fully knew what Proverbs 13:12 was talking about:

Hope deferred makes the heart sick, but fulfilled longing is the tree of life.

I felt completely hopeless and my heart was sick with pain, anger, sadness, and envy. I felt that my longing had been denied. The question that kept turning in my mind was "why would God say no to my earnest pleas?"

Then it dawned on me... Who am I to think I should be saved from such pain? There are so many people who are dealing with extremely painful issues: autism, cerebral palsy, down syndrome, epilepsy, cancer, family illnesses and death, starvation, abuse, etc. Who am I to be spared? God has a purpose for me, Grant, Aaron and Wesley. He has a plan for our family. I have heard and read Jeremiah 29:11 countless times but now I must lean on it's promises:

'For I know the plans I have for you,' declares the LORD, 'plans to prosper you and not to harm you, plans to give you hope and a future.'

I am learning each day to dwell not on the unknown of Grant's future but to instead focus on what is known about God and His promises. While I know the pain will never completely go away (in fact, there are days when the pain surges to new level), I am learning to breath again - to smile from the inside again. I know that God will be glorified and I pray that His strength will shine through my (and Grant's) weaknesses... and that is the best purpose any man can fulfill. 

. . . . . . . . . .

But [God] said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. 2 Corinthians 12:9
. . . . . . . . . . 

'For my thoughts are not your thoughts, neither are your ways my ways,' declares the LORD. 'As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts. 

As the rain and the snow come down from heaven, do not return to it without watering the earth and making it bud and flourish, so that it yields seed for the sower and bread for the eater, so is my word that goes out from my mouth: It will not return to me empty, but will accomplish what I desire and achieve the purpose for which I sent it. 

You will go out in joy and be led forth in peace; the mountains and hills will burst into song before you, and all the trees of the field will clap their hands.'  Isaiah 55:8-12


May 15, 2011

Update 5/15/2011

Things are busy here as usual. With warm weather the norm, we are always outside. If we're not outside, Grant is plastered the backdoor frustrated that he can't get out.

Grant continues to progress - slowly but surely. I am working on the paperwork to get him into the Duke Fragile X Clinic. I was told that it is possible they may have a spot for him towards the end of summer! I can't wait to get some clear guidance on some specific issues. Also, Grant will be in the hospital at the end of the month for a 24-hour video EEG (electroencephalogram). An EEG is a test that measures and records the electrical activity of the brain. We need to find out if Grant is experiencing any seizures.

Wesley turned 14 months old on Friday and is getting faster by the day. I can hardly keep up with the boy. He is learning sign language along with Grant, can make several animal sounds, and I am pretty sure he is training to be a sprinter. He loves trucks, tractors and his Thomas train. I love hearing him make motor noises as he drives the vehicles around. He is eating a little better but still not up to par. Please continue to pray for this.

We do have a huge praise to share... Wesley's Fragile X test results came back negative! Praise the LORD! Not only did we confirm that Wes does not have the full mutation but he does not have the premutation either (he is not a carrier). This is wonderful news! Wesley will not have the issues that come with the premutated form of Fragile X and he will not have to worry about passing the gene on to his children. We are so thankful for this blessing!

Time continues to fly by and there is only a few more weeks of school for Aaron! He is very much looking forward to the change of pace painting will give him this summer. God continues to provide exactly what we need each month. Praise God! We are so thankful. With Jehovah Jireh we are never in want and I am learning to enjoy the contentment that comes with simple living.

Two things I asked of You, do not refuse me before I die: keep deception and lies far from me, give me neither poverty nor riches; feed me with the food that is my portion, that I not be full and deny You and say, 'Who is the LORD?' or that I not be in want and steal, and profane the name of my God. Proverbs 30:7-9
© Choosing Gratitude | All rights reserved.
Blog Layout Created by pipdig