A birthday!

Hello all... It has actually been a whole year since Olivia came into this world, and (to quote Jerry Garcia) "what a long strange trip its been" I some times feel like it has been several years and other times like it was just the other day...I don't miss the hospital, but I miss the encouragement of many of the doctors and the nurses. Olivia has come such a LONG way in a year, that it really nothing short of a miracle. If she had been born 30 years ago, I am not sure if she would have survived. She barely survived the first 4 months. I am not sure if I ever wrote about how scary things got last December, but she was revived with chest compressions (CPR, basically) a few times, and that her lungs were so bad then that the doctors could barely bring themselves to show us the X-ray. They did reluctantly about a month later, when Olivia was breathing on her own. I must say that we could not have done it without our huge extended cast of characters (and oh, what characters they are!!). We have Susan and Kyle; Dave and Barbara; Tim and Sharon; Susie, Ingird and the whole 4th grade Sunday School team at CUMC; ALL the other Schultz's (Steven, who created a link for us to Richard Barrette, who has had incredibly valuable advice and uplifting messages) especially my brother (Chas) and sister (Sarah, aka Sally) who both called many times over to see how things were going. My inner circle of coworkers (those who actually ask how Olivia is doing on a regular basis) I am eternally grateful to my best friend on this Earth (after Adrienne) Crit, who has allowed me to use up his bandwidth for and indefinite amount of time so that you all could read my ramblings. Everybody wanted to help somehow-someway-anyway-anyhow... and with all the help coming usually just in the nick of time, we have made this far, only the rest of our lives to go!

So, we celebrate a year of LIFE for Olivia. She is a fighter indeed. She could have given up at any time, but she is tenacious and has always made sure that we know it. She has adapted us to her needs, that much is certain. We have struggled in many ways, we doubted the intentions of those around us, only to have the fears quashed and our faith reconfirmed. The world has gone through some very tumultuous times in the past year. Death and destruction are running rampant in all 4 corners of the globe, and yet we continue on. The world has shown its true colors in much the same way that those involved with our new world of Olivia and CdLS have shown their true colors. Those who are truly good people stepped up and helped out. We have fought doctors (not a great deal, but there has been some head-butting) my insurance company (if you have ever seen the movie The Incredibles, Bob Parr works for an insurance company whose major objective is to deny all claims and make the shareholders happy; that is what it feels like for many families I am sure) and each other. Luckily, we are able to overcome our internal squabbles and move forward.

Sara and Andy have been unbelievably resilient and patient, even if I have not always been patient with them. It is strange to think that healthy typical children would know about feeding tubes and genetic anomalies and all the issues in between. Andy is always one to ask if other babies that he sees might have a feeding tube or need oxygen or spend their 1st 4 months of life mostly in the hospital. I have to have faith that their ability to cope and absorb the situation that we did not expect and did not know anything about comes from being surrounded by "steadfast love" that knows no bounds of time or space....

Okay, now that I have given my acceptance speech, I will give you a current update of sorts...( I want to thank my agent, Bernie, for believing in this project, and my acting coach who taught me how to use my instrument, and all the people at the studio, I couldn't have done it without you!! you know who you are) ahhh, yeah...okay for real now...

School has started and another season of soccer for Sara (I am coaching her team of 17 girls, don't ask me why) and Andy is still in preschool for this year (late Sept Birthday, he missed the cutoff for Kindergarten) and Olivia has been going to some Physical Therapy (PT) and has just started some Occupational Therapy (OT) too. Her PT is for muscle strengthening. We have learned the various exercises and positions to do with her to make her use her arms more and to build upper body strength and over all balance. She can pretty much sit up on her own for a minute or two. We keep her from just tipping over more due to the Mic-Key button and her severe reflux than from worry about her getting hurt falling over. If she leans on the Mic-Key button sight (where her G-tube connects for feeding) too much, it gets irritated and the skin breaks down around it. If she is shaken up too much (tipping over and sloshing around from being picked up and carried and moved around) she will have a bout of reflux and it is hard on her. I am sure it is painful and rips up her esophagus, along with the way in which she tightens up and is stiff. She appears to hold her breath and try to not spit up, which causes some junk to come out her nose, and then is also painful.

Her OT will be exercises around her mouth and facial muscles to improve her ability to use her tongue and eventually drink fluids and eat actual food. She has come a long way with regards to being orally defensive though. She likes to put some chew rings/toys in her mouth even is they do make her gag and maybe spit up. That is a good sign if she will continue to do things like that and not shut down orally.

Olivia loves to laugh and be tickled too. Her laugh is a rather hoarse grunting sound, but is obviously laughter when she combines it with her Betty Boop eyes. When she is really laughing a lot, her little "hoo" sounds and grunting are like a kid playing machine gun, little sharp bursts of the sounds. I can tickle her with my face (like blowing raspberries on her chin) and with my fingers if she is in a real receptive mood. Andy will play peek-a-boo with her and get her laughing louder than anyone else can. She does hear much better than she used to, and she likes TV a lot too. (I think she has a thing for college football, especially if LSU or Michigan is playing; smart girl).

She does have her moments of behavior that is unique to the syndrome I suppose. We have some nights where she just isn't tired and won't go to sleep. Unlike typical children and babies, we can't just leave her alone with the knowledge that she will just fall asleep while crying. When she gets on a crying binge, she generates more mucous and more gas (the mucous is hard to digest and the gas can cause her to spit up). In general, it is a long slow process to draw the mucous out of her stomach via the feeding the tube, and get her calm enough to relax and sleep. Even if she doesn't get all worked up crying, sometimes she just won't go to sleep easily. If left alone, she would get herself turned around and put too much strain on the Mic-Key button, causing to bleed and become more irritated, or it will disconnect from the feeding tube and formula from the pump and from her stomach will leak all over (yeah, that is a real fun one to clean up in the middle of the night).

So, she keeps us on our toes and makes sure we don't ignore her signs of distress that might be the beginnings of a reflux episode. We will keep at it, and make sure she is safe and dry (thank goodness that we do have a clean and dry place for her) and we will shower her with love and affection and we will surely make it through another day and another week and on to the next holiday and into the upcoming years. Thanks for all your support for this past year, and you know we will be counting on your continued support into the future. Be sure to keep Roger and Sally in your thoughts and prayers (and send him a card for his B-day on Sep 19th), and know that their own ordeal is unique and universal like ours. There are many others suffering too, but when you are in the thick of it in the wee hours of the night, you are fully alone and scared. Daylight does break as always, and the sun washes some of the despair away, but it lingers on...so, call e-mail, write and just say hello. We won't bite (and if we do, we usually don't draw blood), we are just tired and a bit dazed, and we welcome and need the contact.

be seeing you, Andrew