The 4th has come and gone. Summer is flying by so quickly. We are enjoying it though. On June 30, we headed to Eufaula, OK, where my dad was preaching at a camp. Although last year we went for the whole week, this year, we just went for Thursday. But, all of my siblings with their families were able to be there. My sister, Beth, even flew in for the day. We packed 3 family celebrations into one day. My siblings and I went together to get our mom a mother’s ring with our birthstones and we gave it to her when we were all together. My sister just turned 40 so we celebrated that. Then, last Thursday was my brother and sister-in-law’s anniversary of 15 years. It was a fun, action-packed day. It was a long day for Philip but he did well, snoozing in his chair when he needed. We used his pump to do his feedings during the day there and it worked really well. It has been a blessing for sure. Ethan was able to go down to the pond at the camp with Ben and my dad and Poppa helped him catch a fish. That was a great first! Joyanna just enjoyed all the activity!
The college is closed for the 4th of July week so Ben has some days off. We celebrated the 4th by attending a parade here in town with my sister, Angie and her husband, Jason. Then that evening, we went to Ben’s brother, Mitchell’s house. The cousins love spending time together. They are all right around the same age. We came home before dark though. We’ve had years where we could enjoy fireworks but that’s not the season we are in right now. Sleep is too important, especially for Joyanna right now. We try to maintain a tighter schedule for her sake. Otherwise, she really feels the effects.
Joyanna is really experiencing a transition right now. It’s obvious she has hit the next level in the progression of the disease. She is very unsteady, falling often. She lacks attention and focus to accomplish almost any task. She is very emotional. Dehydration is starting to be an issue because we cannot get her to drink enough. Therefore, she has started having nosebleeds. It’s been hard for me because we are to the point of experiencing a similar progression like Philip. Up until this point, some things were difficult for Joyanna but she was mostly still independent. Now, she must be fed and needs a hand when walking most distances to keep from falling.
She has been evaluated for speech therapy and will start soon. The goal for therapy will actually be to learn an assistive device. The therapist will use a software for ipad that will allow her to communicate far longer than she can speak words. This will be helpful because she can express needs-hungry, thirsty, tired, etc. Please pray she can learn this technology well enough for it to be useful for her.
Philip’s medicine transition has gone well. He is completely off the old medicine and we have not seen significant change so we truly believe it was doing little for him. The new medicine seems to have been tolerated well and we have seen a few smiles here and there so we may be seeking to raise that dosage to an even more helpful level. He has only had 2 tonic seizures that I’ve seen in the last few weeks. That’s a blessing.
Philip has a new issue we are beginning to work through. We believe his lack of muscle support has caused some misalignment of his frame. This past week he has seemed to be in some pain and we have narrowed that down to maybe his lower back. His shoulders, hips and knees seem to be out of line so we think some help may be needed to regain a proper alignment. We have been on a waiting list for physical therapy at the Children’s Center since March. The therapists through this organization are familiar with complex medical conditions like Philip has. We have known their input was needed so we were determined to wait to get in there and not anywhere else. The last I had heard the wait was 5 months putting us into August. However, Ben got a call yesterday to schedule Philip’s evaluation. We will take him in a week from Monday. Praise the Lord! The timing is perfect. So many times we have seen the Lord work on our behalf beyond our control to bring about just what we need when we need it. Please pray that Philip will not be in pain until we can get some input to help him. Please pray the Lord will direct Ben and I to help him in correct positioning and pain management.
I think we caught a little cold, including Philip, so we had to begin using his suction machine to relieve him of the congestion. He has been struggling with it constantly. He HATES being suctioned out. (I probably would, too!) Please pray we can do that with care and quickly each time and that God gives Philip a special measure of grace to endure it.
Tuesday night we had our annual vacation treat: Ice Cream for Supper! We’ve gone to many of the ice cream places around town so in an effort to be original we decided to try some of the Paleterias (Hispanic ice cream shops). There was a key lime ice cream that I tried that was particularly yummy. Joyanna and Ethan really enjoyed such an unusual supper. At the last shop we stopped at, they had tiny homemade ice cream bars. They really liked those.
The bathroom remodel is moving ahead. The contractor is applying for the necessary permits and getting everything in order. For that reason, we don't have a date. If you've done much with permits and licensing, you know how that goes. The plan is that it will be before the summer is over.
If you haven't been to the pictures tab recently, we put the portraits we just took of the kids at the end of May. I am thrilled at how they turned out. We took them right after Philip had the stomach bug and was so happy. I have been teasing that we got the two little ones well enough and Philip sick enough to get such good photos.
Even though it’s been a harder time the last few weeks, the Lord has been obvious in His care over us. His messages of love have been sent through many of you and circumstances in general. We know He is walking with us even through the darkest of days. One of those times was when a friend was used of the Lord to tell me about a song. She said every time she listens to it she thinks of us and prays for us. In the words below, you’ll see why! Verse 2 & 3 specifically spoke to my heart so that’s the ones I’ve included. What an encouragement to be reminded through song that He gives us strength to continue on the journey!
I’ll Pray Again
Verse 2
At a quarter past 2, again in the morning, a mother wakes up again.
Her youngest daughter has a special condition.
They say that she won't pass ten.
The worry's so great, and nothing's changed. "Does God understand us at all?
"We're out of answers, and we're feeling small."
But as she read in the Bible page after page,
the comfort came in right along with grace.
Her hand held her daughter's and they knelt on the floor.
"Though we don't understand what it's for, we'll trust one day more!"
Chorus
We'll pray again. We'll kneel again.
We'll knock on the door, ask Him for more
strength for the fight. Peace in the night.
Trusting by faith, the answer He'll send!
We'll pray again.
Verse 3
When the darkness surrounds you, and God seems so silent. Your back's against the wall.
You may be tempted to doubt God's goodness. It feels like He won't hear your call.
The questions take shape and cloud your mind.
"Is God in control after all? My life's out of balance and I'm going to fall!"
But if you'll read in the Bible page after page,
you'll see that He's there and He'll never forsake.
Surrender your life is all you must do.
You'll begin to see God's point of view:
He's there to change YOU!
Chorus
Go pray again. Go kneel again.
Go knock on the door, ask Him for more
strength for the fight. Peace in the night,
trusting by faith the answer He'll send.
Go pray again.
Go kneel again. Go pray again.
Sung by Benjamin Everson
Words & Music by Benjamin Everson
(C) 2009