Everyday activities

This week has nothing really new to report. Aaron brought home from church a lovely cold that he promptly shared with each of us, except Zach thankfully.

Zach is still having sporadic seizures throughout the day. They are quite small and many of them seem to happen when he gets startled. We are not sure if we will ever be able to get complete control of all his seizures. My mind sometimes wanders to what physical ailment might finally takes him from us. Thank goodness that it is in God's hands.

Zach's list of nicknames has been growing about as fast as he has. If you haven't had a chance to see Zach lately you are missing out on our "little" portly pork chop. If the Lord blesses us with Zach until Halloween, we have already decided that Zach will be Sir Topham Hatt from Thomas the Tank Engine series. (For those of you creative people out there...help!)

Thank you again for your prayers. I know that I have no idea the full impact that they are having, but I know my faith has been strengthen during these times.

Rollar coaster

When I look back at last week's post, I can get so frustrated. We have had to increase Zach's medication again this week. We were noticing very small spasm activity and with this type of seizure, it has to be completely eradicated. Also Zach has become very fussy (crying/screaming); it's another side effect of the IM med he's on. And when it happens throughout the night...ugh! So we have started him again on Valium, but this time with a little Morphine. Bye-bye to my smiley baby, for now.

Tomorrow Craig and I will be visiting the cemetery.

Thinking back a year ago, Good Friday, we found out that our precious baby would have some serious challenges in this life. We thought, at that time, that we would be having a special needs baby. Instead, the Lord has chosen to bless us with a terminal baby. For some odd reason, typing that word terminal made me think of an airport. Zach is not here to stay. He's on his way to heaven and God has allowed him for a time to have a layover here with us.

Praise to the One who conquered death. Remember Him this Easter season.

Let the Praises Ring!

For the past month I had noticed sadly that Zach wasn't smiling at all anymore. I know that the sadness I felt over this was grieving the potential that he might never smile again.

Thank you, Lord, my happy baby is back! The new seizure med is finally working after one increase in the dose; we haven't noticed any seizures since Saturday. The Valium is out of his system, and he is so chatty and interactive. A few weeks ago, he didn't even have the energy to suck on his pacifier. It is amazing the difference in just a few short days.

We went to the cardiologist on Friday, and for some reason I was expecting him to be upset with us over this medication. Instead, he began to chuckle to himself and then made reference to God having a hand in Zach's cocktail of daily medications. He then explained to us that one of the side effects of the Acthar medication is high blood pressure. Zach's heart actually works MORE efficiently with a higher blood pressure! And Zach's skin has been a challenge for us to maintain as he has had pretty severe eczema, but now his skin would be the envy of people the world over. It is so beautiful! (We have been warned, though, that severe acne is probably going to be coming. We'll enjoy his gorgeous skin as long as we get it!) When a doctor has to give credit to God, I can do nothing but "Let the Praises Ring!" (This has been one of Aaron's favorite songs recently, and he will randomly yell out these words. I'm sure as I reminder to me!)

Prayer

Craig and I ask for prayer as we visit a funeral home this Friday afternoon. I really hope that I like this one because I don't want to do this more than once.

Family Fun

It was so much fun to have my Auntie Ann come into town from British Columbia for a long weekend. She pampered all of us with some very relaxing foot massages, and of course we couldn't leave anybody out!

Tunnel with no light yet

The seizures continue...Zach has been diagnosed with infantile spasms. These are seizures that don't respond to regular seizure meds, so he is currently taking a drug called Acthar. It is definitely not a "clean" drug. It has many not-so-good side effects, but according to the doctor Zach will hopefully only need to be on the medication for a short term. The goal is that this med would quickly eliminate the spasms and the EEG pattern that is connected with it.

Because of Zach's heart condition, our neurologist is choosing to start with a low dose and work his way up. So far we had not seen a whole lot of changes in the seizure activity. We have been on the medication for a week now. Oh, and did I mention that it is an intramuscular injection administered daily by Yours Truly? It really is amazing what a parent can learn to do for their child.