Saturday, April 28, 2007
On another note, we went to a block party this afternoon and Jack just loved the little boy's Vtech 3-in-1 Smart Wheels so if you are wondering what to get Jack for his birthday next month....they are sold at Wal-Mart, Target, and Toys R Us. The suggested retail price is $39.99 so you may want to get a couple of people to go in on it with you. Also, he can always use more books with bright crisp colorful illustrations. Oh yeah, how much is a sandbox or does someone want to volunteer to build one? I think Jack would enjoy it if he'd try it. Oooohh, also I know he would love one of those sand and water tables for outdoor play.
Monday, April 23, 2007
Sunday, April 22, 2007
Look how cute he was playing in the garage before we left for church.
Here we are at the park. Jack had his first ride on a merry go round...loving every minute or hanging on for dear life? I think he alternated between the two.
Jack just loved walking with his push toy at the park. He wanted to do that more than anything else but I did get him to at least investigate the rest of the playground equipment.
After we left the park, we came home to wash the car. Here's Jack coming down the stairs saying, "Wait for me, Mommy, I'm gonna help."
I thought I'd have some cute pictures of him all wet and soapy from "helping" me wash the car but he would not get near the water and instead walked all around me until he finally said, "Hey, let me in. I'm gonna watch a movie." This last picture is him sitting in the air conditioned car watching a movie while I'm slaving away outside!
After I washed the nasty car the best that I could without any help from my little boy, we headed off to our local McDonald's so Jack could play while we ate. He had a great time again just walking around holding my hands.
God is teaching me through Jack. I am always in such a hurry to get to the next thing that I often forget to enjoy where I am. Even with Jack, I feel like I've been trying to push his independent walking, trying to make him walk without holding on to me but today as he grabbed my hands, I realized...This is great! My little boy is happy just holding my hand exploring a play area. You should have heard the chuckles and exclamations and just the joy in his voice as we walked around and around those same few tables. He really loved being with me and it just felt so good. God is giving me moments to enjoy and cherish and hold on to and I am too busy asking him to bring the next blessing. How ungrateful is that?!!?
Jack is already in bed for the night for about an hour and a half now with no drops in his oxygen level (WOOHOO!). I'd better get on to bed, too. What a great day! My heart is just full of joy and gratefulness.
Thanks for all the prayers!
Of course, I did not just leave him there. I made sure he swallowed all his food and he laid down for a very short nap. I tell ya' when he quits nursing we will have to give him a pack of crackers when he gets ready for bed. :)
Saturday, April 21, 2007
plaguing Jack today so right now he's having some juice and graham crackers to soothe the savage 22 3/4 month old.
Friday, April 20, 2007
David stayed home from work today so that I could sleep in some this morning and so that I would not go crazy trying to take care of high energy baby and work while completely exhausted.
We have called Dr. Lozano again and are waiting for him to call back.
In the meantime, Jack is getting some more teeth, as evidenced by the drool drool drool and little tiny white spots on his gums.
Well, I better get back to working and taking care of Jack.
Pray for us. Pray for Dr. Lozano to have wisdom in treating Jack. Pray that Jack will continue to be resilient and continue to develop. Pray that David and I will remember that we are both suffering from disappointment and sleep loss and show the love that lies very deep in our hearts to one another. Pray that we will have wisdom as Jack's parents and make decisions that are in his best interests no matter what anyone else may think or say. Pray for me that I will find rest somehow and that I will remain positive despite being so frustrated and overwhelmed. Cover, smother, slather, wrap us up in prayer.
Thursday, April 19, 2007
The older I get, the more I enjoy Saturday mornings. Perhaps it's the quiet solitude that comes with being the first to rise, or maybe it's the unbounded joy of not having to be at work. Either way, the first few hours of a Saturday morning are most enjoyable.A few weeks ago, I was shuffling toward the garage with a steaming cup of coffee in one hand and the morning paper in the other. What began as a typical Saturday morning turned into one of those lessons that life seems to hand you from time to time. Let me tell you about it:I turned the dial up into the phone portion of the band on my ham radio in order to listen to a Saturday morning swap net. Along the way, I came across an older sounding chap, with a tremendous signal and a golden voice. You know the kind; he sounded like he should be in the broadcasting business. He was telling whomever he was talking with something about "a thousand marbles." I was intrigued and stopped to listen to what he had to say "Well, Tom, it sure sounds like you're busy with your job. I'm sure they pay you well but it's a shame you have to be away from home and your family so much. Hard to believe a young fellow should have to work sixty or seventy hours a week to make ends meet. It's too bad you missed your daughter's "dance recital" he continued. "Let me tell you something that has helped me keep my own priorities." And that's when he began to explain his theory of a "thousand marbles.""You see, I sat down one day and did a little arithmetic. The average person lives about seventy-five years. I know, some live more and some live less, but on average, folks live about seventy-five years."Now then, I multiplied 75 times 52 and I came up with 3900, which is the number of Saturdays that the average person has in their entire lifetime. Now, stick with me, Tom, I'm getting to the important part.It took me until I was fifty-five years old to think about all this in any detail", he went on, "and by that time I had lived through over twenty-eight hundred Saturdays." "I got to thinking that if I lived to be seventy-five, I only had about a thousand of them left to enjoy. So I went to a toy store and bought every single marble they had. I ended up having to visit three toy stores to round up 1000 marbles. I took them home and put them inside a large, clear plastic container right here in the shack next to my gear.""Every Saturday since then, I have taken one marble out and thrown it away. I found that by watching the marbles diminish, I focused more on the really important things in life. There is nothing like watching your time here on this earth run out to help get your priorities straight.""Now let me tell you one last thing before I sign-off with you and take my lovely wife out for breakfast. This morning, I took the very last marble out of the container. I figure that if I make it until next Saturday then I have been given a little extra time. And the one thing we can all use is a little more time." "It was nice to meet you Tom, I hope you spend more time with your family, and I hope to meet you again here on the band. This is a 75 Year old Man, K9NZQ, clear and going QRT, good morning!" You could have heard a pin drop on the band when this fellow signed off. I guess he gave us all a lot to think about. I had planned to work on the antenna that morning, and then I was going to meet up with a few hams to work on the next club newsletter.Instead, I went upstairs and woke my wife up with a kiss. "C'mon honey, I'm taking you and the kids to breakfast." "What brought this on?" she asked with a smile. "Oh, nothing special, it's just been a long time since we spent a Saturday together with the kids. And hey, can we stop at a toy store while we're out? I need to buy some marbles.
The Pot God Plants us in.
What a good story!
Our house was directly across the street from the clinic entrance of Johns
Hopkins Hospital in Baltimore. We lived downstairs and rented the upstairs
rooms to out patients at the clinic.
One summer evening as I was fixing supper, there was a knock at the door. I
opened it to see a truly awful looking man. "Why, he's hardly taller than my
8-year-old," I thought as I stared at the stooped, shriveled body. But the
appalling thing was his face, lopsided from swelling, red and raw.
Yet his voice was pleasant as he said, "Good evening. I've come to see if
you've a room for just one night. I came for a treatment this morning from
the eastern shore, and there's no bus 'til morning." He told me he'd been
hunting for a room since noon but with no success, no one seemed to have a
room. "I guess it's my face.... I know it looks terrible, but my doctor says
with a few more treatments .."
For a moment I hesitated, but his next words convinced me: "I could sleep
in this rocking chair on the porch. My bus leaves early in the morning."
I told him we would find him a bed, but to rest on the porch. I went inside
and finished getting supper When we were ready, I asked the old man if he
would join us. "No, thank you. I have plenty." And he held up a brown paper
When I had finished the dishes, I went out on the porch to talk with him a
few minutes. It didn't take a long time to see that this old man had an
oversized heart crowded into that tiny body. He told me he fished for a
living to support his daughter, her 5 children, and her husband, who was
hopelessly crippled from a back injury. He didn't tell it by way of
complaint; in fact, every other sentence was prefaced with a thanks to God
for a blessing. He was grateful that no pain accompanied his disease, which
was apparently a form of skin cancer. He thanked God for giving him the
strength to keep going.
At bedtime, we put a camp cot in the children's room for him. When I got up
in the morning, the bed linens were neatly folded and the little man was out
on the porch.
He refused breakfast, but just before he left for his bus, haltingly, as if
asking a great favor, he said, "Could I please come back and stay the next
time I have a treatment? I won't put you out a bit. I can sleep fine in a
chair." He paused a moment and then added, "Your children made me feel at
home. Grownups are bothered by my face, but children don't seem to mind." I
told him he was welcome to come again.
And, on his next trip, he arrived a little after 7 in the morning. As a
gift, he brought a big fish and a quart of the largest oysters I had ever
seen! He said he had shucked them that morning before he left so that they'd
be nice and fresh. I knew his bus left at 4:00 a.m. And I wondered what time
he had to get up in order to do this for us.
In the years he came to stay overnight with us, there was never a time that
he did not bring us fish or oysters or vegetables from his garden. Other
times we received packages in the mail, always by special delivery; fish and
oysters packed in a box of fresh young spinach or kale, every leaf carefully
washed. Knowing that he must walk 3 miles to mail these, and knowing how
little money he had made the gifts doubly precious.
When I received these little remembrances, I often thought of a comment our
next-door neighbor made after he left that first morning. "Did you keep
that awful looking man last night? I turned him away! You can lose roomers
by putting up such people!"
Maybe we did lose roomers once or twice. But, oh! if only they could have
known him, perhaps their illnesses would have been easier to bear.
I know our family always will be grateful to have known him; from him we
learned what it was to accept the bad without complaint and the good with
gratitude to God.
Recently I was visiting a friend, who has a greenhouse, as she showed me
her flowers, we came to the most beautiful one of all, a golden
chrysanthemum, bursting with blooms. But to my great surprise, it was
growing in an old dented, rusty bucket. I thought to myself, "If this were
my plant, I'd put it in the loveliest container I had!"
My friend changed my mind. "I ran short of pots," she explained, "and
knowing how beautiful this one would be, I thought it wouldn't mind starting
out in this old pail. It's just for a little while, till I can put it out in
<> She must have wondered why I laughed so delightedly, but I was imagining
just such a scene in heaven. "Here's an especially beautiful one," God might
have said when he came to the soul of the sweet old fisherman. "He won't
mind starting in this small body."
All this happened long ago - and now, in God's garden, how tall this lovely
soul must stand.
The LORD does not look at the things man looks at. Man looks at the outward
appearance, but the LORD looks at the heart." (1 Samuel 16:7b)
Wednesday, April 18, 2007
Dr. Lozano was very happy this morning. He is going to keep Jack on an IPAP of 18, EPAP of 10, back-up rate 0f 22 and we will add 1 liter of oxygen. Dr. Lozano said that Jack had only 1 significant desaturation once the pressure was up to 17 in the sleep lab. I reminded him that Jack had many more than that at home on a pressure of 18 and he said that that was just one night and it might just take some getting used to but we should definitely call if it happens again.
Here are some pictures of Jack hooked up for the sleep study so you can get an idea of what it looks like.
Here are the limb leads covered with elastic tape. These leads tell the doctor about any movement of his legs during sleep.
These three pictures show the chest and abdominal straps and leads. These help the doc to "see" whether Jack's muscles are working "in sync" and helps to show the difference between obstructive and central sleep apnea.
Oh yeah, more good news on that front. Jack does have some central sleep apnea but it IS NOT related to his Apert syndrome or the swelling that occured from all the subdural fluid. His central apnea is normal for his age group and there is no reason to believe that he won't grow out of it like other children his age.
These pictures show more chest leads, chin leads, cheek leads and eye leads. These all help the doc to know what stage of sleep Jack is in.
Also, it's hard to see in the pictures but there is also a little microphone taped to the right side of his neck so they can hear him breathing.
Of course, there's the pulse oximeter.
This is what he looked like before the airflow monitor and snore microphone were added and before the tech wrapped his head. There are wires attached in his hair and behind his ears but you can't see them well.
Now here he is with his head wrapped, snore mic/airflow monitor in place, and I started getting his head gear on. The second picture was to show all the wires they have running off of him.
Finally, all wrapped up and getting the mask on and completely hooked up and asleep.
I'll keep you posted on how it goes.
Tuesday, April 17, 2007
Last night was VERY tough. At the beginning of the night he seemed to do very well but then the desaturations started. We are going back to the sleep lab tonight to have the Bipap titrated. Keep those prayers coming!
Monday, April 16, 2007
So our great new pal Bruce under orders from our great new doc Dr. Lozano changed Jack's pressures to significantly higher levels and changed Jack's back-up respiratory rate as well. For those of you who know what the numbers refer to I'll give them to you. He will have an IPAP of 18 cm H2O, an EPAP of 10 cm H2O, and a back-up rate of 24. Dr. Lozano is making arrangements to get us into the sleep lab again before the end of the week.
Please pray for us tonight and each night as you drift peacefully into restful slumber. We really want to do the same.
Sunday, April 15, 2007
Friday, April 13, 2007
Thursday, April 12, 2007
Wednesday, April 11, 2007
Here's a couple of pictures of Jack and David weeding the yard on Monday. Very cute...a man and his boy working in the yard....
Here's Captain Jack discovering that he can spin the Captain's wheel at the top of his slide...
One final thing. A police officer that I am working with has been nominated for America's Most Wanted All-stars. Winning this prize could really help his family out financially. Please consider voting for him. Voting ends very soon so please help him out.
Tuesday, April 10, 2007
We had our first follow up appointment in the sleep clinic today. Dr. Lazano was out of town due to a death in his family so we saw Dr. Makris instead. He told us that the CPAP machine showed that Jack was having apneic or hypopnic events on an average of 30 times per hour. Remember that's while wearing the CPAP! (YIKES!) No wonder it seems like the sat alarm is going off all night long and I am constantly working to get him to breathe. Now we have a new plan. We are going to try auto-titrating Bipap. Bipap differs from CPAP because CPAP which stands for continuous positive airway pressure delivers one constant level of pressure. Bipap delivers pressure on inhalation and lets up on the pressure with exhalation. When Jack begins a breath the Bipap will help him to take a deep breath through any obstruction and also prevent him from taking those little tiny shallow breaths that he tends
Sunday, April 8, 2007
Here's how adorable Jack looked at our family Easter celebration today.
I copied this from Wikipedia:
"Some professionals choose to use the adjective orthotic as a noun, usually describing a foot supporting device or insole. Orthosis (plural: orthoses) is the base word for orthotic and is grammatically more apt to describe the items or devices that provide direct contact with a portion of the external body surface, rendering resistance to unwanted movement. All orthoses are fabricated prior to or concurrent with being delivered or fitted to the person using them, even casts- as they are created on the patient and become effective for use prior to being used by hardening. Some of the devices are made or fabricated with specifications that derive directly from considerations of a single person end user. Some orthoses are made to fit by sizing; e.g. small, medium, large
Podiatrists, physical therapists and sports medicine practitioners will often prescribed custom foot orthoses as part of a treatment regimen.
They are prescribed to:
Reduce the symptoms associated with many foot related pathologies.
Accommodate foot deformity
Provide better positioning
Relieve pressure on a certain area of the foot
Improve the overall biomechanical function of the foot and lower extremity"
In Jack's case the orthotics provide support and improve the overall biomechanical function of the foot. Without them, he tends to walk on the inside of his feet which causes balance problems and Mary Beth, one of his physical therapists, tells me that if he does not wear them the muscle will get stretched out as he is growing and that would cause more problems later on. Anyway, we just started trying to get him to wear them again and he is already doing great with them on. He has taken some independent steps with them and he spontaneously let go of me and just stood in one spot wearing the orthotics. YAY Jack!
Also, while watching Baby Signing Time in the car today, Jack said dog. Then in the tub tonight I was trying to get him to say dog again and I was saying "dog woof woof" and he said "oof oof" a couple of times repeating me!!!
It's exciting and exhausting times around here....Happy Easter!