Happy Day

Macayla had a day full of laughing yesterday. She just seemed to find most noises and people funny. She smiled and cooed a lot. She still seems happy this morning, but I think she wore herself out yesterday. She fell asleep early and is a bit reserved today compared to yesterday. 

By the way, if you haven't already, you may want to check out the latest on Jacob. 

House Finches

It's that time of year when a few house finches build their nests under the awning of our back porch. Every year we have at least two couples building a home out there. They do not have to worry about foreclosure. They do not have to worry about water bills or electric bills. They do not have to worry about doctors or medications. They build their nests, hatch their young and leave until next year. In the moments before yesterday's dawn, I could hear them chirping and it brought to mind the time Jesus said for us to look at the birds, they neither sow nor reap but our heavenly Father feeds them, are you not more important than they? The chirping of those birds reminded me not to worry as Jesus said. Worry adds nothing to us but anxiety and later Paul would write be anxious for nothing, but in all things through prayer and petition with thanksgiving let your requests be known to God and the peace that surpasses all understanding will guard your hearts and minds in Christ Jesus.

Worry prevents peace. Worry distorts our hearts and minds. But Paul said for us to make our requests "known" to God. Doesn't God already know my requests? Doesn't He already know my needs? Obviously, if He is an all-knowing God, He does. So, why do I have to make them known? Apparently, when struggles come along, making our requests "known" to God is for our benefit, not His. When we make requests known through prayer and petition with thanksgiving, it helps us have the proper perspective on our needs and our worry. It helps us be honest about ourselves and desires. When I remember to be thankful for what I do have, it helps me not get so wrapped up in what I don't have. Nothing here tells me that God will simply remove my struggles or that I can simply put everything on "cruise control." The birds still have to build their nests and get the food God provided. I think the key to what Paul wrote often gets overlooked. People often quote this text beginning with verse six, "Be anxious for nothing..." But the second half of verse five has the short sentence, "The Lord is near." The chapter and verse numbering was developed centuries after this letter was written, but I believe if Paul could have had a say in how the text was numbered, I think he would have put "The Lord is near," in with verse six. "The Lord is near. Be anxious for nothing..." God is a transcendent, all-powerful, all-knowing Being who decided to be immanent among His creatures. 

As Easter approaches, we can be reminded how immanent the God of the universe decided to be. He put on flesh, dwelt among us, lived a sin-free life, died and rose again. His death was for us, for our sins, so that while we were enemies of God in this fallen world, He came and died so that we might have life, so that we might have more than this fallen world has to offer. He is in it with us and for us. We only have to trust Him. We must build our nests, our lives, within His shelter. I'm glad I hear the chirping before dawn. It reminds me to be thankful and allow God's peace to guard and shelter my heart and mind for the day. It reminds me where my life needs to be built.

New Child

Macayla woke up a new child today. She was relaxed and had no seizures that we are aware of. She just smiled and "talked" some. She even crinkled her nose as she smiled a few times. It was very nice to see her back to herself. It helped us all relax. We appreciate the ongoing prayers and thoughts of so many. We really could not go through this with any real strength with out the grace of God and He communicates it to us through so many of His people. Thank you.

Three Days In A Row

Macayla's day mirrored yesterday. She started with a grand mal at 6 a.m. along with a bunch small seizures. She got diastat but did not react. She continued to be agitated all morning. We took her to see the endocrinologist to day to see what, if anything, could be done to lessen puberty's painful effects for her. Throughout lunch and the waiting room, Macayla kept having seizure-like actions and it became difficult to determine if they were petit mal or grand mal seizures. Her grand mal seizures do not usually cause massive convulsions like they would in others. So, she got another dose of diastat but it still did not knock her out. Just like yesterday, she had a rough morning but then on her own she settled down in the afternoon. I'm hoping she's done for the week.

I will post more on the endocrinology visit on the Uncommon Needs blog later. I have some research to do for that, but the gist is that Macayla is at a Tanner 4 according to the doctor. She could start menses sometime between two months to a year from now. Of course this brings with it discomfort, cramping and pain. None of which Macayla will be able to communicate with us. So there is a drug called Lupron that can be used to stop her periods completely. It is an injection given every three months according to the doctor. He also advised us that long-term use causes osteoporosis and is not advisable in most children. But Macayla's life span is short enough that this should not be a problem for her. We are going to research some articles the doctor recommended to us and then decide. He said that if we choose to use the medication, then we would be advised to wait until the first menses occurs. We are also aware of the ethical concerns of this approach. That is why we want to research and pray over it. Unfortunately, the medical community has not done much to look into these issues to help families make these decisions. So, research it is.

Not Fun

Macayla had a grand mal yesterday around 2 p.m. We were just coming back from the park where she responded and smiled a good bit when the geese would honk. She seemed fairly happy and not "seizurish" at all. But she zonked out afterward and slept until 4:30 a.m. this morning. She was very agitated and had another seizure at 6 a.m. We gave her diastat and she slept until about 10. She is still agitated and doesn't seem to be out of the seizures yet. She keeps going from cold to hot. She's not running a temp, but she gets goose bumps one minute and then flushed and hot the next. It has not been a fun day for her. I wish we could make her feel better.

The Biggest Person in the House

Macayla has done well this week overall. The antibiotics are working and she has stopped running any fevers or throwing up. She has struggled a good bit with secretions and has had to be suctioned in the mornings a good bit. She started a few clusters of seizures yesterday, but never had any grand mals.

But now for the really big news. Jennifer turns 36 today! For the next month and seven days, she will be older than me! Jacob says she is the "biggest" person in the house. At 5 years old, the word "big" means "older." Of course, he also thinks that the "biggest" person is the boss and I have to assure him (when Jennifer is not around) that I'm the boss! He doesn't seem to believe me for some reason. Every year we have fun joking about how I'm married to an older woman for a month. Jennifer doesn't find the humor in it as much as I do. 

New Infection

Macayla started running a fever and throwing up over the weekend. It looked like she may be getting an infection around her feeding tube, but it is always hard to know for sure. The last time she was running a fever and throwing up, we noticed that she had redness and swelling right at the scar of her old tube site. It makes us wonder if she possibly has a pocket left there that is perfect for abscesses to form. But she also exhibits symptoms of coughing and excess phlegm like she could have a sinus or respiratory infection. It is hard to know. It could be that she is refluxing the infection up if there is an abscess in the stoma at the original feeding tube site. (Boy I hope you are not reading this during your lunch break!)

Anyway, we have started antibiotics and her fever and vomit have both stayed down. She smiled a lot today and with the beautiful weather we have had for two days, I think she got a bit of spring fever, which is much better than an actual fever. We went outside and hopefully the blooming bradford pear trees will not aggravate her sinus. As I am writing all this detail about Macayla's bodily fluids, it makes me wonder if I should start a weight-loss blog where I could supply detailed descriptions of the gross stuff that happens in home health. Then readers could log on and lose their appetites and lose weight! Well, maybe not. I see this stuff daily and my appetite has not suffered! Better stick to the gym.

Snow!

We had to wait until March for it, but we finally got snow in Anderson. Five inches of snow! Jacob was very excited. Unfortunately, Macayla slept through the event as she had seizures and had to get Diastat. She is smiling more today, but the snow is melting quickly.

The event started with rain that slowly turned to snow. But Jacob could not wait to catch the snow on his tongue. The rain stopped and the snow piled up through the evening and into the night. Twice I had to climb a ladder to clean the snow off of the satellite dish to keep the signal so we could watch for weather updates. O.k. really I just wanted to watch a Clint Eastwood movie. Looking out the window was all the weather update we needed.

The snow was good this morning but the sun is warm and the snow won't be around long. That did not stop Jacob from mounting an extensive snowball attack on dad! Jennifer got involved and they ganged up on poor, little old me. But I gave them a barrage of snowball fire they will not soon forget!