Progress?

What's been going on with Jack? Where are the updates? I am behind on just about everything. The continual sleep deprivation is having its effect. Since the last update, we have had some serious disagreements with Dr. Lazano who had changed from saying that Jack might need a trach to insisting that the ONLY option was to trach Jack. We had another sleep study and were given yet another machine with even higher pressures. They now want us to use a Bipap Synchrony because if these new pressures don't work out, it can do pressure control ventilation. In the meantime, Jack managed to breathe without support of any kind Sunday night. He only dropped his saturation level a few times but only as low as 70 and he bounced right back up. Last night he spent most of the night without the machine because he simply did not tolerate the excessive pressure. Again, he did pretty well off the machine. So it appears that Jack is making progress. The problem is that its not 100% consistent and!
I still don't get to sleep. Pray for us.
Oh yeah, the big boy is now 2 (since Sunday). I think he is enjoying being two. We will have a party next weekend. I hope to post pictures soon.

Happy Mother's Day

Happy Mother's Day to all the moms out there! It seems that my little almost two year old is very good at picking out and ordering jewelry. Those of you who know me personally have seen my first Mother's Day necklace that is a little book that says, "To the best mom" and you open it and it says "I love you." You've seen it even if you did not notice it. I wear it everyday. Now it seems I'll have to decide which necklace to wear. This year, Jack bought me a beautiful locket. I scanned it so you could see it.

It came with a little fingerprint kit and I am going to put his right index finger fingerprint in one side of the locket and I am going to see if I can manage to take a picture of him and shrink it small enough to fit the other side.

I have wanted to be a mother as long as I've remembered. It has been harder than I thought it would be but it has also been a lot more rewarding than I could have imagined!

Here's a little article that a friend sent along to me that I know you moms out there can identify with:

>> Anna Quindlen, Newsweek Columnist and Author:>>>> All my babies are gone now. I say this not in sorrow but indisbelief.>> I take great satisfaction in what I have today: three almost-adults, >> two taller than I am, one closing in fast. Three people who read the>> same books I do and have learned not to be afraid of disagreeing with>> me in their opinion of them, who sometimes tell vulgar jokes that >> make me laugh until I choke and cry, who need razor blades and shower>> gel and privacy, who want to keep their doors closed more than Ilike.>> Who, miraculously, go to the bathroom, zip up their jackets and move >> food from plate to mouth all by themselves. Like the trick soap I>> bought for the bathroom with a rubber ducky at its center, the baby>> is buried deep within each, barely discernible except through the >> unreliable haze of the past.>>>> Everything in all the books I once poured over is finished for menow.>> Penelope Leach., T. Berry Brazelton., Dr. Spock. The ones on sibling>> rivalry and sleeping through the night and early-childhood education,>> have all grown obsolete. Along with Goodnight Moon and Where the Wild>> Things Are, they are battered, spotted, well used. But I suspect that >> if you flipped the pages dust would rise like memories. What those>> books taught me, finally, and what the women on the playground taught>> me, and the well-meaning relations --what they taught me, was that >> they couldn't really teach me very much at all.>>>> Raising children is presented at first as a true-false test, then>> becomes multiple choice, until finally, far along, you realize that >> it is an endless essay. No one knows anything. One child responds>> well to positive reinforcement, another can be managed only with a>> stern voice and a timeout. One child is toilet trained at 3, his sibling at 2.>>>> When my first child was born, parents were told to put baby to bed on>> his belly so that he would not choke on his own spit-up. By the time>> my last arrived, babies were put down on their backs because of >> research on sudden infant death syndrome. To a new parent this>> ever-shifting certainty is terrifying, and then soothing. Eventually>> you must learn to trust yourself. Eventually the research will follow.>> I remember 15 years ago poring over one of Dr. Brazelton's wonderful>> books on child development, in which he describes three different>> sorts of infants: average, quiet, and active. I was looking for a >> sub-quiet codicil for an 18-month old who did not walk. Was there>> something wrong with his fat little legs? Was there something wrong>> with his tiny little mind? Was he developmentally delayed, physically >> challenged? Was I insane? Last year he went to China . Next year he>> goes to college. He can talk just fine. He can walk, too.>>>> Every part of raising children is humbling, too. Believe me, mistakes >> were made. T hey have all been enshrined in the, "Remember-When->> Mom-Did Hall of Fame." The outbursts, the temper tantrums, the bad>> language, mine, not theirs. The times the baby fell off the bed. The >> times I arrived late for preschool pickup. The nightmare sleepover.>> The horrible summer camp. The day when the youngest came barreling>> out of the classroom with a 98 on her geography test, and I >> responded, "What did you get wrong?". (She insisted I include that.)>> The time I ordered food at the McDonald's drive-through speaker and>> then drove away without picking it up from the window. (They all >> insisted I include that.) I did not allow them to watch the Simpsons>> for the first two seasons. What was I thinking?>>>> But the biggest mistake I made is the one that most of us make while >> doing this. I did not live in the moment enough. This is particularly>> clear now that the moment is gone, captured only in photographs.>> There is one picture of the three of them, sitting in the grass on a >> quilt in the shadow of the swing set on a summer day, ages 6, 4 and>> 1. And I wish I could remember what we ate, and what we talked about,>> and how they sounded, and how they looked when they slept that night. >> I wish I had not been in such a hurry to get on to the next thing:>> dinner, bath, book, bed. I wish I had treasured the doing a little>> more and the getting it done a little less.>> >> Even today I'm not sure what worked and what didn't, what was me and>> what was simply life. When they were very small, I suppose I thought>> someday they would become who they were because of what I'd done. Now >> I suspect they simply grew into their true selves because they>> demanded in a thousand ways that I back off and let them be. The>> books said to be relaxed and I was often tense, matter-of-fact and I >> was sometimes over the top. And look how it all turned out. I wound>> up with the three people I like best in the world, who have done more>> than anyone to excavate my essential humanity. That's what the books >> never told me. I was bound and determined to learn from the experts.>> It just took me a while to figure out who the experts were.

Bad Blogger

Ok so I realized today (with a little help from my daughter-in-law) that I have been remiss in my duties as a blogging mom and grandmom. I completely neglected to include pictures of Jack's playdate with his niece, my beautiful granddaughter, Elise. To be fair, if you look back there was nothing blogged between April 28 and May 7 so I must have been busy doing something...oh I don't know...taking care of Jack...working....doing all the mundane daily tasks associated with keeping a home, who knows but I think I was busy.

For those of you who do not already know who Elise is, she is the daughter of my stepson Patrick and his wife Holly. She was born on Thanksgiving Day 2004. We were all very thankful for her arrival.

Anyway, she and Patrick came by and David, Patrick, Elise, and Jack hung out by the pool while Honey/Marie/Nana/Mommy (that's me) worked. Do you know how distracting it is to have two absolutely adorable munchkins right outside your door while you are trying to get some work done? David got these great pictures:

First up, here's Elise saying, "Quit being a cranky pants, Uncle Jack! Come get in the pool."
[We were trying to get Jack to stay up later before his nap each day. It was an arduous process and we finally decided that it was just better to get him to sleep longer when he does nap and whaddya know--he started getting sleepy later once we gave up trying to force it.]

Here's Elise contenplating taking on the giraffe as Jack handles the snake (yes, we are from Alabama but no snake handling is not part of our worship).


Sadly, it was time for Elise and Patrick to leave. Elise and Jack embraced...
You should have seen the huge smile on Jack's face after Elise gave him this big ol' hug. He loves his niece!

Here's a photo of the Daddy and his two tiny tots...
Okay so one of them appears to be much taller than Dad in this photo. I don't think Patrick is that much taller than David. I'm really not sure that he is taller than David at all but this photo makes Patrick look like a giant!


Our little town has this festival that they do every spring to raise money for the Kiwanis. It's really grown into a pretty big event. I have been planning to take Jack ever since we moved here last October. We almost did not go because I had really imagined that he would be more independently mobile by this time. I was not sure how much he would enjoy it. I decided to take the plunge and off we went. We enjoyed listening to the music and dancing together [so it was more of a hold me and bounce me, Mommy, who cares I call it dancing]. I took the camera and thought I'd get a few shots of Jack doing some cute stuff. This is the only picture that I was able to take... I am going to hire a photographer to follow us around and get some good pictures.
Hope y'all enjoyed the catch up on the blog.
Nighty night!

Pictures from Our Weekend Get-together

I did not post any pictures from our weekend's activities because [audible gasp] I did not take any. I had the best of intentions. My camera was charged and I had plenty of space on my memory stick. BUT it was just one of those weekends when I could not manage to manage everything, know what I mean? ;)

Here are some great pics that a dear friend took for us and just sent to us. The first one is a a group shot right before the cake was cut. Up next is Jack enjoying cotton candy for the first time. Do you think he liked it? Finally, we spent a few minutes doing some relaxing swinging before heading back home.

Specific Prayer Requests

Jack’s pulmonologist here at home, Dr. Lozano, just called. First, let me say that I truly believe that he cares about Jack and has his best interests at heart. We are not scheduled to follow up with him again until August but he’s been worried about Jack so he has called a few times to see how Jack is doing. Jack is not currently using the Bipap only because he is super congested and is unable to tolerate it. Once we get this cleared up, we are going to put it on again. Dr. Lozano is concerned because even with the Bipap, Jack drops his saturation level to as low as 13 usually at least once a night and sometimes 5-7 times a night. He is concerned that Jack will suffer heart damage from the low saturation. Now, Jack does not drop and stay down. In fact, he will drop down as low as 13 but he will move right back up to 97-100%. Sometimes he will stay at 97-100% and sometimes he will begin dropping again immediately. For now, Dr. Lozano is talking about frequent sleep studies to try to optimize the settings on his Bipap and to monitor him. He has mentioned several times now that we may need to consider a trach. We will get copies of the sleep studies and get Dr. Mandujano’s (our TX pulmonologist) opinion when we go back to Dallas at the end of June.
We need everyone to pray very specifically that Jack not drop his oxygen saturations while sleeping at night. If he does continue to drop, David and I need wisdom in making a decision regarding a tracheostomy. Pray that our ears will be open to hear what is best for Jack. Pray that God will give Jack's doctors wisdom in coming up with a plan to best care for Jack. I know that God has a plan for Jack. I don't know what it is and I don't know all the steps along the way. He has taken us down roads that I have not wished to travel but I know that it is ultimately for our good. Please pray that God will continue to provide the strength for this journey.

Antibiotics vs. Sinus and Ear Infection Round 3

So I am a bit behind on the blog. Jack has still not completely recovered from that sinus and ear infection that he developed about two weeks ago. Turns out that we should not have kept putting the Bipap on him when he has a known infection. If only someone had told me that two weeks ago, we might not be on round 3 of antibiotics. He has never been so pitiful when sick. He has been sicker than this before but never this pitiful. I think he is old enough now that he is able to think about the things he would like to be doing but he is also able to realize that he does not feel well enough to do them. His throat must be pretty sore. He squeaks when he cries. It's terrible. I am very glad that Jack knows that Mommy is there for him. It's really touching the way he just reaches out to me and just wants me to be nearby. I am going to be real here and say that it also gets frustrating because it's hard for me to get much done that way but what's more important than heaping love on my little guy anyway? So tonight he is sleeping upright in his car seat with 2 liters of oxygen by nasal cannula. So far (he's been asleep less than an hour) he has not had any obstructive or central apnea. We'll just see how the next few days go.

In other news, we had a pretty good weekend especially when you stop to consider how bad Jack must have felt and I did not know it. Looking back, he did complain of a headache alot this weekend. Anyway, on Saturday, Jack and I did our first solo road trip. We traveled about 2.5 hours away (took us a little over 3 hours actually) to get together with some other children and adults with Apert syndrome. Jack did so great on the ride down and believe it or not did not sleep. He just watched his Signing Time video and a Baby Galileo video and snacked and just kind of hung out. So about the time we arrived at our gathering Jack was way ready for a nap. He was very clingy after he woke up but we were still able to enjoy ourselves and chatted briefly with just about everyone at the get-together (if we missed talking to you, I'm sorry but you saw that I was busy keeping up with busy Baby Jack). On Sunday, we missed church because Jack took a great 2 hour long nap! He did wake up in plenty of time for us to go to Springfest at my in-laws church so that was good. It was hot and Jack again complained of headache and was very clingy (YES, I am clueless sometimes) but we still were able to have fun. Jack and I got in one of the bouncy things together and he just loved it. I should buy one of those things because boy was it a workout. It was very very hot so we went inside where Jack got to walk around a bit and we hung out with his Grandma, my wonderful Mom-in-law. I was so glad that we went to hang out with Grandma. When Jack gets clingy he likes to nurse ALOT and I was a little nervous about nursing in public at their church. Jack was squirming around in my lap and she looked over at me and says you nurse that baby right here and now if that's what he needs. She continued Nobody will know what they're looking at and if they do and they don't like it well too bad! Yay for the support from Grandma!!!

Well, Jack is no longer sleeping upright in the carseat. He woke up and he wasn't going back in the seat. Hope he sleeps well the rest of the night in the bed. I better go and get some sleep.