A Better Day
Posted on | March 21, 2009 | No Comments
When we wrote on Monday, John was having a rough time. So it is nice to report this evening that John has been doing much better this week. On Tuesday, Wednesday, and Thursday, John only had two seizures that required an extra dose of medication—and each time, one does did it. So after having had his worst four days through Monday, he had his best three days since then. Friday, he had one seizure which required two doses of medicine, but is doing well tonight. I just changed his diaper and he was wide awake, so we took a little time to hang out and discuss Aggie basketball.
Remarkable
Posted on | March 17, 2009 | No Comments
Remarkable is how our neurologist described John tonight. Remarkable that he can tolerate so much medicine. Remarkable that he can tolerate these extended seizures. Remarkable that he is still hanging in there.
Yet, here he is with us, tonight, on his 6 month birthday (we wrote this last night, on Monday). Kelly wrote about some time she and John had together tonight as William and I attempted to discover how many animals would fit on Noah’s ark: “It was a beautiful evening so I thought I would sit on the front porch with John. The air was cool, and I wanted to see the first star come out. I also wanted to sing some hymns to him and a very special song I haven’t ever gotten to sing to him before: ‘Happy Birthday to you!’ John is 6 months old today and we are so thankful he is with us.”
Thankful indeed. For John and so many other things.
March Notes from Our Friends
Posted on | March 1, 2009 | No Comments
Sunday, March 1, 2009 7:56 AM, CST
Dear Kelly and Bill,
May God continue to bless you all and care abundantly for John and William. I keep thinking of how you ministered to the hospital staff at Dell. I thank you for encouraging me with faith in Christ you all are displaying through such a difficult time. Love Gretchen Bixler
Saturday, March 21, 2009 8:31 AM, CDT
I am so glad to hear that John (and you all too!) had a good rest of the week. May the Lord continue to be with you all and give you his peace.
Love and prayers,
Lori
lori akin
A Long Night
Posted on | February 23, 2009 | No Comments
John’s seizures continued into the night. When we went to sleep last night, he was still having them. Though because he was heavily medicated, they are greatly subdued. This morning, we’ve still seen some activity, though we’ve cut back on the additional medication. Just not sure more will do much good.
A Few Things
Posted on | February 21, 2009 | No Comments
We haven’t written in a while because there is not all that much new to report. But a few things spring to mind over the last couple of weeks.
Last weekend we went to Fredericksburg to visit Kelly’s parents. It was the first time we have spent the night anywhere except for our home or a medical facility since last August! A nice break.
It started out a little rough with John’s blood oxygen level dropping more than we’ve seen it in a while. Funny thing is that it wasn’t associated with a seizure—at least a visible one—as this usually is. Then he had a seizure, though it didn’t seem to get any worse. But John was very congested. My thought is that when he is awake he doesn’t really know how to switch from breathing through his nose to his mouth, and so wasn’t getting enough oxygen from breathing through his nose. We cleaned out his nose and he did better.
I Really Should Get Dressed
Posted on | February 9, 2009 | No Comments
Last week was a challenging week. Not so much that John has had a difficult week—it was about the same on average as others recently. And much better than the first two weeks when we came home.
The challenge has been more with us, as we try to get into some sort of routine or normalcy. But we are learning our routine won’t be routine, and our normal will be very different from what we would consider normal.
I mentioned the other day our situation at home might be compared to what it is like when you bring a newborn home from the hospital. What isn’t normal about it that John isn’t a newborn anymore. But he is still like that—can’t hold his head up, we are up several times a night with him, etc. And it isn’t likely—from a medical perspective—that this will change significantly. So when John is one year and 25 pounds, there is a good chance he’ll still be in the same condition. Yet we will no longer be able to haul him around in his infant car seat as we do now. We are going to be facing a transition, though it isn’t the transition we expected. And we are not sure what it will look like.
Don’t Waste Your Life
Posted on | February 4, 2009 | No Comments
I awoke this morning at 6 a.m. with one son yelling, “Dad!,” and the other one having a seizure.
In the first case, William isn’t particularly fond of sleeping in his own room/bed these days. So it is a daily (and nightly) challenge to work through this issue. When William awakes in the night as he did here—and had done earlier as well, he usually calls out and wants me to come get in bed with him. This morning I explained to him that that wasn’t possible, that I needed to give John his medicine. After further discussion, he was willing to quietly wait 5 minutes for me while I took care of john, with the hope of course that he would be asleep by the time I came back.
In the second case, I wasn’t aware John was having a seizure when I woke up. Often times he is noisy during a seizure because his breathing becomes labored. That wasn’t the situation this morning. So after I spoke with William, I prepared John’s medicines. While doing so, I gave thanks to God for answering my prayers—and I am confident the prayers of many others—that John would not have any seizures throughout the night.
February Notes from Our Friends
Posted on | February 1, 2009 | No Comments
Sunday, February 1, 2009 12:45 AM, CST
Kelly:
Please know that you, John and all of your family are in my thoughts and prayers. Many challenges lie ahead. Your faith in God will give you strength and help you to find the good. God Bless.
With love,
Fln
Fln Neve
Fort Worth, TXSunday, February 1, 2009 3:35 PM, CST
Kelly—
You and your family are in my prayers.
Lynn Oden McBroom
Monday, February 2, 2009 9:33 AM, CST
Kelly–
I am so very sorry to hear about your son. I will keep all of you in my prayers. Take care.
Carolyn Blakeley Greaves
Carolyn Greaves
Dallas, TX
Monday, February 2, 2009 5:50 PM, CST
My thoughts and prayers are with you and your family during this time of your life with your new precious son, john. he is adorable and i know a blessing to you all. may you gain strength and courage through your strong faith. give a big hug to his cute big brother, too.
kate meyer
baltimore, MD
Life at Home
Posted on | January 31, 2009 | No Comments
I received a note from a friend today. She said, “I haven’t seen any Caringbridge updates lately…is that good or bad?”
Well, in one sense, it is neither. It is just life.
John is home, of course. It has been two weeks since we brought him back home from his second tour in the hospital, at Dell’s PICU. And of course it has been one week since we brought Kelly home from her second tour at Seton. William came back home on Monday evening from Houston. So we’ve all been back together for about 5 days now. It has been a very hectic pace.
January Notes from Our Friends
Posted on | January 1, 2009 | No Comments
Friday, January 2, 2009 9:02 AM, CST
I’m so thankful you are all home together! Love the family picture. God is good. Praying for seizures to cease!
Gayle Clark
Austin, TX
Sunday, January 4, 2009 4:39 PM, CST
What a blessing to rejoice with you today at John’s baptism. Thank you so much for letting us know about it. Please keep the updates coming now that you are home.
With love and thanks for your precious family,
Ed and Jamie
Jamie Kruft
Monday, January 12, 2009 11:00 AM, CST
I pray God continues to bless you as you care for John. I am so glad he was a blessing to the woman at Westminster. What a blessing for you to see your son bring her such joy. I am praying for continued wisdom and encouragement for you. May you know with sure conviction that God is faithful and compassionate, strong and enduring.
Amy Jo Dunsmore