Friday, July 31, 2009

Higher quality video (same movie)

Here is another way to view the movie in higher quality:

Video- End of July-Baby O

So sorry it has been so long since I have posted video of O. (I was having technical difficulties)

As you can see, O has made a lot of progress since the last video. She can hold herself up on her hands better and with more strength. She can hold a rattle. And she holds her head in midline while on her back with the best of them! She is so much bigger than her starting weight of 4 lbs. She now weighs a whopping 10 lbs! Soon she will be bigger than Mommy O!
Enjoy our little movie of Baby O!

Wednesday, July 29, 2009

New photos added

Added some new photos to the BEST of BABY O

Tuesday, July 28, 2009

Sojourners Prayer of the Day 7.28.09

This is most definitely a worthy prayer:

"Jesus, we pray for women facing unintended pregnancies.
May the church offer them loving embraces and support amid their vulnerability."

Monday, July 27, 2009

This made me think of life with O

(This is AWESOME ... something we should all remember...
.....Thanks cousins Kathy and MaryAnne! )

A 92-year-old, petite, well-poised and proud man, who is fully dressed each morning by eight o'clock, with his hair fashionably combed and shaved perfectly, even though he is legally blind, moved to a nursing home today.

His wife of 70 years recently passed away, making the move necessary. After many hours of waiting patiently in the lobby of the nursing home, he smiled sweetly when told his room was ready.
As he maneuvered his walker to the elevator, I provided a visual
description of his tiny room, including the eyelet sheets that had been hung on his window.

"I love it," he stated with the enthusiasm of an eight-year-old
having just been presented with a new puppy.
"Mr. Jones, you haven't seen the room; just wait".

"That doesn't have anything to do with it", he replied.
"Happiness is something you decide on ahead of time.
Whether I like my room or not doesn't depend on how the
furniture is arranged .... it's how I arrange my mind. I already decided to love it.
It's a decision I make every morning when I wake up. I have a choice.
I can spend the day in bed recounting the difficulty I have with
the parts of my body that no longer work, or get out of bed and be
thankful for the ones that do.
Each day is a gift, and as long as my eyes open, I'll focus on the
new day and all the happy memories I've stored away.. Just for this time in my life".

Old age is like a bank account. You withdraw from what you've put in. So, my advice to you would be to deposit a lot of happiness in the bank account of memories!

Thank you for your part in filling my Memory Bank.

I am still depositing.

Remember the five simple rules to be happy:

1. Free your heart from hatred.

2. Free your mind from worries..

3. Live simply.

4. Give more.

5. Expect less.

Friday, July 24, 2009

From Insomnia to Narcolepsy! :-)

Here is a little update on O's sleeping.

Nights remain pretty decent. She still eats about twice at night and is not the fastest in the world to get to sleep for the night. But she is usually sound asleep by 10-ish. We still try to get the bath early which is about 6pm. Then try to get to the nursery to start soothing by 7pm. We have had some nights when she has been asleep by 7. Some by 8, or 9 and the worst is sometimes 10. Probably not too bad so far.

The days have gotten remarkably better since Mommy's humble phone calls Monday night to the Pediatrician and Aunt Jen who is a Mom, Montessori trained and works for a Montessori Training Center. There were some simple changes made, such as putting O down for naps sooner and with less soothing (only 5 minutes) and then Mommy leaving the room. O has not cried anymore with this new routine. When Mommy was more involved in getting her to sleep at nap time she cried more! Go figure! Mommy is also to work to have O have more independent time during the day with Mommy doing her own thing in the room with O and O having to entertain herself and soothe herself with only minimal intervention by Mommy. This is also going well. The first day O protested this new plan, but by the second day it was going well.

The narcolepsy??? O has been taking really long naps now. As long as 2 and 3 hours and has also been taking more cat naps. Even at inopportune moments when Mommy thought she was ready to eat, but she falls asleep while Mommy gets the bottle! This is the current situation. I am now waiting for her to wake up and hoping it is soon so we don't waste a bottle. The alimentum is expensive!!!!

We are also making some progress on the back arching. In the written report from the Physical therapist we read that she attributes much of this behavior to GERD (gastro esophageal reflux disorder) GERD is common with Down syndrome. Today we further increased the angling of her crib, and are also keeping her upright 2o to 30 minutes after a bottle. This is usually in an infant seat, or sometimes being held. It doesn't seem to matter which I do, she stays asleep when put in her crib.

We have our happy calm sweet baby back! Hallelujah!!!! Praise God!!!
Mommy is doing the St Anne Novena this week... two intentions!!! Gratitude for O and For O to sleep well. Thanks for the intercession St Anne. St Anne is O's name sake as it is part of her middle name.

Thursday, July 23, 2009

Neat quotes

These are some quotes from mothers of kids with Down syndrome:

" I have gotten to the point that I think she actually has a BETTER life because of her Down syndrome. That may sound strange to some people but she doesn't know any different and she does live in the moment and love unconditionally. ..I only wish I could do that."

"I am so jealous of our kids for their ability to live in the moment and just love everyone and love life!....way cool! I think I am the developmentally delayed one. I don't mean that sarcastically either, I keep doing the same things over and over and she's already "got it"!

National Catholic Register Ds Article

This is an interesting article about Down syndrome from the National Catholic Register.
It reminds us how wonderful it is that Olivia's birthmother chose LIFE for Olivia when 9 out of 10 women with a prenatal diagnosis of Ds would not be so brave and wonderful!
God Bless her birthmother!

Friday, July 17, 2009

Stinkin' Tired

Yes, we have reached the point of being fall asleep standing up, can't think straight, stinkin' tired. We realize we have hit that really tough phase where you simply are trying to find a way make it through. O is loveable and a real sweetheart, but we are beginning to admit to ourselves that she is a demanding, extremely-fussy/colicky baby. She is this way all day from about 6AM until about 9PM. It is very hard to put her down during that time and if she does go down she only sleeps for a short while. She can be soothed and will sleep better if held - but that is a bad habit we are trying not to fall into. Having a child with a disability gives us an appreciation for not applying labels to people, but we hope the admittance that O is colicky will be cathartic and maybe bring some kindly souls out of the woodwork. At night, O is pretty good to Mommy - it is those days that are problem! Bless her heart, O seems to realize it is night and only feeds twice. However, due to her Down syndrome those feedings can take around an hour. 9PM to 6AM with two feedings just isn't enough sleep for O or Mommy. Daddy does the best he can to keep the house going while Mommy tends to O, but we do need a paycheck.

I apologize up front for any missed or late cards, slowly or unreturned emails, a lack of phone calls, a lack of future blog posts, a lack of future photos on Shutterfly, or trips out to visit anyone. We simply have to hunker down, focus on the home front, pull up our boot straps and get ourselves through this. As we don't see any reinforcements or calvary on the horizon, we know we're goin' to have to fend for ourselves - and that means being a bit self-centered for a while. We won't stay this way (we promise), but please have patience with us during this time. Please also pray for all three of us.

- Daddy O

People First Language!

Say "People with disabilities," instead of "The handicapped or disabled."

Say "He has a cognitive disability," instead of "He's mentally retarded."

Say "He has Down syndrome," instead of "He's Down's / a Down's kid."

Say "Children without disabilities," instead of "Normal / healthy / regular children."

Thursday, July 16, 2009

Eye Doctor

O had her first opthamology checkup today. There were no signs of glaucoma or cataracts. And her eyes look healthy. YEAH! Yes, some kids with Down syndrome are born with cataracts that require immediate surgery to avoid blindness. The doctor also checked that the retina had developed normally given O was born premature. Apparently, the eyes of some preemies do not finish developing correctly. O is slightly far sighted in the same way that all newborns all. We will not need to go about for another year unless we notice any signs of a lazy eye that don't go away by the time she is 6 months-old (corrected age). We were told that children with Down syndrome are more susceptible to a lazy eye given the overall low muscle tone in their bodies.

Mommy and Daddy thought that O did really well at the appointment. A little crying but overall very cooperative. O tells the story differently. She will tell you that she is so tough and strong that it took Daddy holding her body, Mommy holding her arms, a nurse just to hold the eyelids open, and a doctor to do the exam. "Small but strong" is O's motto. We will let you decide which version of the story you like best :-)

- Daddy O

Wednesday, July 15, 2009

Adoption Placement

Just heard from our adoption worker that the court has processed the petition to formally place O with us for adoption. As such, O is no longer our foster child but is now officially the child we are adopting!!! Besides the obvious good feeling, this also makes us her full custodians/guardians and able to make all medical decisions without first consulting the agency. With placement we can also finally get her onto our insurance. Since we prefer to use the nearest doctors in IN and O was on MI medicaid we had to pay for all of her medical care ourselves. It will be nice to not have to pay those expenses directly!

The agency plans to request finalization in mid-November, which is six months from O's release from NICU, since we have been caring for her from that date. However, the court may not accept that and may require six months from the adoption placement. Either way, we are in the home stretch of the adoption process. The last step should be a formality.

UPDATE: Just learned that the judge actually signed the papers on June 26th. Apparently some clerk simply forgot to let anyone know or mail the paperwork.

- Daddy O

The Greatest Generations

We have fashioned a lot about how we are trying to raise O from how we saw our mothers, our grandmothers, our great-grandmothers and our aunts raise their children. We want a simpler, more down-to-earth life for O and for us. That means we cook and eat homemade meals, we keep up on the housework, we keep up on the laundry, we take ample time to get on the floor and play with O rather than parking her in a convenience baby care item. We know this isn't possible for all parents today, and are grateful that we are blessed with the ability to do so. The realization that it is hard work makes us admire and appreciate the lives of giving and sacrifice by the generations that preceded us. We have some extra work having a child with special needs ... the extra doctor and therapy appointments that throw O off of her rhythm for multiple days, the different ways that somethings have to be done. Certainly being older parents doesn't help. O makes it all worthwhile, but we hoping to hire some part-time in-home assistance to help with baby care and light housework. To us, such a person will have a role much like that of an extended family member or what an older child might have done when we were growing up. Much like God has blessed us with O, we pray that God will help lead us to the right helper.

- Daddy O

Postponing Consideration of Boy J

We decided to postpone our visit with J. Those of you who know us well know that we take very seriously the care of children and realize that children with special needs can require a lot of extra care. Right now we are still learning what extra care O will need. While our hearts desperately want J in our lives, we realize that we aren't doing either O or J any good if we have to cut too many corners to parent them both. As such, we decided to postpone our consideration of J for a while.

- Daddy O

Tuesday, July 14, 2009

PT Girl

We think that O is PT girl! Physical Therapy, or Party or Pretty Tired! Which ever PT fits the day! O had a GREAT time at the Family Reunion on Sunday! We so appreciated the warm Baumgartner Family Welcome that O received! We are so blessed to be a part of the family and we are so blessed that you welcome O to be one of us! I think about how PROUD Grandma and Grandpa B and Uncle Bill and Aunt Marge would be of all of their descendants and everyone who has joined the family through marriage, friendship, adoption and foster care. Everyone is family in my estimation and everyone is valued and loved! I think that my years away from the reunions has only solidified my appreciation for each and everyone of you! Thanks for being my family and for filling my life with love, laughter and life!

O survived Sunday just fine! She seemed to really be happy and enjoying herself. O was so interested in seeing everyone! It was so neat to see this! Next year she will be even more in the swing of things. Because of the DS we don't know if she will be crawling or walking yet, but we will keep on working on getting her ready to be as active and involved in next year's reunion as possible! I DO think that someone should design a Family Reunion 2010 shirt! O would love to have a special shirt to wear! So would we! Connie and Dennis do such beautiful work! The printing holds up to washings so very well! It is amazing! And the quality of the t shirts is great! Connie is not charging near what her effort would be worth. Such a kind offer on Connie and Dennis' part! OK I hope I have everyone pumped up to get their creative juices flowing to design a shirt!

Yesterday we went to Daddy O's family's house at the same Lake to see his family! O loves to be outdoors and be around people. Only problem is that she is now overtired! Our little baby who doesn't cry and will always sleep and nap in her crib has other ideas today! At the moment she is peacefully sleeping in her chair next to me and getting rested for her bath. She has slept most of the afternoon and hopefully we will have restored her normal rested state. I guess we play we pay! But it was so wonderful to spend two days with family.

Saturday, July 11, 2009

New photos

I just added some new photos to the Best of Baby O on Shutterfly

Here is a preview:

Friday, July 10, 2009

Thursday, July 9, 2009

Two Week Storm

As O puts it best ... it can be really tough to be a baby. It appears we have hit that stage that all babies must pass through when their hormones simultaneously tell them to sleep and to be awake ... causing them to do neither very well and leaving them in a state of fussiness. This is normal and not Down syndrome related.

Mommy has been an amazing trooper ... doing her best to keep O content and helping O remain as well rested as possible. This is definitely a major endeavor on Mommy's part. Amazingly, Mommy remains so calm and comforting through it all. Clearly, Mommy O was born to parent. Daddy says, let me push the vacuum and wash bottles - at least for those tasks I can understand what to do. We are getting through it and reminding ourselves that this too shall pass.

We still hope/plan to come to the family reunion on Sunday. O will call the shots on when, how long and in what form. The pediatrician was okay with us going but instructed us not to play "pass the baby" and to have people refrain from stroking her cheek or touching her hands. I will tell you, that is hard with a baby as cute as O!!! As we tell the young nieces and nephews, look with your eyes rather than your hands. Certainly by next year we will be ready to have anyone willing to take her off our hands to take her!!! Hope to see many of you on Sunday.

- Daddy O

Sleeping on the Incline

Another thing we learned yesterday at PT is that the back arching can also be a sign of reflux. Apparently, an infant who has reflux will do a lot of back arching in an instinctive effort to avoid the stomach contents from getting into the lungs. Yeah for God's ingenuity!!!

Last night Daddy worked on the crib so that one end was elevated. Mommy who slept in a chair at bedside last night reports that the six hours O slept were definitely the most peaceful to date. Maybe she was worn out from being up all day :-( or maybe we are onto something. Time will tell, so stay tuned. With O, everyday is the same and everyday is different.

You might ask ... why did Mommy sleep beside last night? Well, she was worried O would end up head down on the incline. Mommy is so smart!!! So, this morning Daddy put a rolled up towel in a U-shape under the crib sheet. Now O and Mommy can sleep knowing that O can't get herself upside down. Of course, it is all setup so that O can't get her face into anything. A bit of tricky engineering work. Sometimes all those years of schooling pays off.

- Daddy O

Wednesday, July 8, 2009

Physical Therapy

O had her PT evaluation today. Gratefully O was in "the mood" to show all that she can do - both the good and the bad. The therapist was amazed that O is able to do many of the things that a baby of her chronological age should be able to do. Normally for a preemie they evaluate milestones based on the corrected age, which is counted from the original due date. Clearly O's willingness to work so hard and Mama O's patience and consistency in working with her are paying off.

The therapist feels that the back-arching and disorganized movement are problematic, not typical, and if not worked out will interfere with O being able to correctly experience the world and impede cognitive development. The most likely culprit is that the core muscles on the front of her torso are too weak relative to the back muscles. She gave us some things to do with her that will get O's brain to think about and respond with her stomach muscles. We need to hold her differently, she showed us a trick that stimulates the stomach muscles, etc. Once again, we have to learn a different set of tricks than what we have seen others use over the years. One thing is to avoid the normal instinct to pat or rub her back (other than during burping) as this causes the back muscles to respond. She says that the weak core muscles are par for the course with Down syndrome and will be something O will have to work on all her life. The weak core and strong back is the opposite of what most babies have so the normal instinct to rub and pat the back helps the balance get resolved in normal babies. In our case, it merely emphasizes the problem.

- Daddy O

Monday, July 6, 2009

New video

O can now hold her head in midline, when she wants to! This has been a long time coming. Before her head would just flop to the side. This is so wonderful to see! She is also grasping objects. She probably doesn't realize what she is doing, but it is encouraging to see that she has the strength to grasp objects. She is in the very beginnings of social smiling and is making more eye contact. She especially likes to make eye contact when it is night time and she is supposed to be falling asleep. She had been trying to make eye contact with me this evening. Now she is trying it with Dad who is fresh home from Chicago. Time for a welcome shower for Mommy. Enjoy the video!

Thursday, July 2, 2009

Unofficial "Double Day"

Hey everyone its me, O.

Guess what, mom and dad weighed me today. Unofficially, I am now 8 lbs 6.5 oz. That means I now weigh twice my birthweight!!! Tomorrow, I go to the doctor and will get an official weigh-in.

Next week will be busy for me. I have both an OT and a PT appointment. I hope they don't make me work too hard. I like exercise and all, but I get worn out easy.

I hope everyone has a safe 4th of July. I hope the fireworks don't keep me awake :-)

Love, O (with some help from Daddy O)

Boy J

Just a little update on Boy J. The social worker is to bring him to our home on July 14th for a visit. We are so looking forward to meeting him in person. He has been in our hearts and minds for nearly 18 months!!!! The goal is to get a sense of how he might do in our family and home. Assuming everyone feels that we are a good match for J, then he could move in shortly thereafter. Finally, all the paperwork to become a licensed foster care home pays off!!! We ask that everyone pray for the gift of Wisdom for us and the social workers as we make a decision regarding J. It will be a lot to care for O and help J adjust to a new home simultaneously, but we feel strongly called by God to prayerfully consider the possibility.

Here are a couple of old photos of J. While they are nearly 18 mos. old, it is easy to see why he has stolen our hearts.

- Daddy O