August Photos

This Summer has been eventful :-)  and so I have not had the opportunity to BLOG. 

 My dear husband moved his home office and moved my computer also this weekend and now my computer is where Olivia and I spend most of our time, so hopefully I can get a chance to BLOG now.

This Summer has seen Olivia maturing in so many ways.  Her speech has come along well as has her signing.  Although her significant hypotonia has her still not walking solo, her supported walking has come along well. She loves to walk holding one or both or our hands and will at times use her walker. She likes to free stand and can do it for longer and longer all the time.  Her Physical Therapist always encourages us that Olivia is doing great given her starting point.

Olivia's crawling is very very good and FAST!

Olivia loves building towers!

Olivia using her walker

Olivia using her crawling tunnel.  Not too interested in crawling into it yet.

Olivia gently getting herself off of her chair as opposed to her old method of diving off head first.

Olivia has finally made friends with her sandbox.  I have been working all summer getting her to use it.  She now loves sitting in it and playing.

Olivia loves her little pool in the backyard.  Both the sandbox and pool are from Grandma and Grandpa B

Oh!!! I really splashed water in my eyes that time! Olivia loves to splash!

Olivia has also finally accepted playing in the grass. Again, I had worked all summer on this.  So nice to see all of my hard work paying off in these outdoor activities.  I had feared that we were not going to make the progress I wanted to see with outdoor textures this summer.  But she is doing great!  Today she even ASKED to go outside and walk. She walks (with help) well on the patio and grass.

Lovin' the beautiful day and the beautiful blue sky in her backyard.

What a little extra thyroid medicine will do!

Olivia gets her bad reading habits from me.
Surround yourself with lots of books and read them all as your  mood  dictates!
There is no such thing as too many books!

As I have mentioned before, Olivia was diagnosed with hypothyroidism at 4 months of age and has been taking medicine ever since. Hypothyroidism affects 80% of people with Down syndrome before they reach adulthood.  It is a major contributor to low cognitive function if left untreated, and also causes kids to be smaller and have less strength and endurance.  If treated appropriately, all is well!  Lucky for us, our first pediatrician knew to keep an eye out for hypothyroidism, and when she saw the warning signs at 4 months old, she ordered blood work to check. Some pediatricians might have waited until the standard yearly check.  It is not prudent to do this!  If they see symptoms, they should check right away.  The cognitive and physical development of the child is at stake! Too much to risk to just wait!

Olivia's latest thyroid blood test showed "normal" TSH and T4.  However she was symptomatic.  She was falling asleep by 9 am and then again by 3 pm.  She fell asleep quickly for nap and bedtime, but her sleep was fitful.  Olivia's gross motor development was struggling as she just did not have the strength that she needed.  Luckily, our new endocrinologist noted that her TSH and T4 were just barely normal and that Olivia was very symptomatic.  She took one look at all the facts and told us that we needed to increase Olivia's dosage. She explained that they don't like the numbers on the edge of normal, as that is not good enough to help developing children.

Olivia has been on the new dosage for about 10 days, and Wow! what a difference!  She can stay awake! She takes a little longer to settle down to sleep. Her sleep is more restful.  She started pulling up to kneeling at the sofa, exercise bar, and shelf, without any help whatsoever from us.  She finally got the "supported pull up to sitting from side lying"!  That one is a big deal!!!!! I have been working with her on that one since January! And she just could not put it all together, because of strength and because she insisted on back arching, and because she just thought it to be a ridiculous idea, because she was able to pull up to sitting by pulling up with both hands, so why am I asking so much of her and wanting her to do this trick.  But now she can do it and she loves doing it!  These two developments took place in the past two days! She is also saying Mama!  Glory Be! And she was saying DaDa a bit just this late afternoon. I also caught her saying Ball, just as plain as day!  In the past few weeks, she had quit talking (almost) and was only signing.  Oh! And the stuff she is learning these days!  It is like an explosion of sheer genius!  Ok... I exaggerate a bit!  But you get the idea! She is amazing us these days in comparison to what had been going on prior to the increase in her thyroid medicine.  Oh, yes! And she is now a pro at getting in and out of sitting for the past week. Add that to her crawling and she can now play happily by herself for as long as a half hour!  She is so neat to watch play! She is so inventive and such the scientist!  And after 18 months of being so incredibly hands on with Olivia all the time, it is so nice to sit back on the sofa and watch! (and drink a cup of tea that is still warm and look at an entire Michael Olaf catalogue in one sitting!)  Oh! And with the increased strength, she can really get some air on that spoon when she throws it!  :-)

Ligamous Laxity continued

This is the photo that I wanted to upload yesterday.  This is Olivia's natural way to pull up to kneeling.  Problem is, it doesn't work.  Study this photo, then try to get up to kneeling using her method.  Not too easy!?!!?  So I continue to work with her (continue, meaning we have been working on this for months) on getting to kneeling from a sitting position (sideways to the shelf) or from a quadruped (up on all fours) position where she picks up one hand, places it on the shelf, picks up the other hand, places it on the shelf and then moves her knees in and then under her.  She can get to kneeling both ways.  We usually do it the sitting way, but recently she has an interest in moving up from a quadruped position.

Oh! Also!  Did you notice that in this photo her head is nearly touching her tush!  Can you do that!?!?!? Another example of ligamous laxity.

Olivia is a crawler! She can get anywhere she wants to go and can get there faster than fast!  Just ask the cats' tails!  She is getting in and out of sitting, albeit the wrong way when I am not there to support her to do it correctly.  But all this movement has increased her independence and has increased the need to get the childproofing completed!  Do you know the difference between crawling and creeping?

Pull up to Standing

Olivia is on a roll these days. This morning she pulled up to standing while holding my hands from a seated position on my legs. It just so happened that Peter had the camera ready to capture this amazing moment. Olivia did this repeatedly all day long and seemed to be having a grand time! I think all the excitement got to her though as our usual easy to bed girl took a good hour to settle down tonight. Hope she sleeps a bit later tomorrow. She has been getting up to feed the roosters breakfast lately.

9 months old

We have to apologize for now BLOGGING recently. We have been very busy working with Olivia and by the time the end of the day rolls around during these cold dark winter months, we eat a warming dinner together, pray, take warm showers, cuddle up and watch a few minutes of TV together and head off to bed to rest our weary bodies and get ready to greet another beautiful day with Olivia. We are enjoying sleeping!!!! That is most nights! She will usually let us sleep until 6 am, except for mornings that she likes to start her speech therapy practice at 4:30 or 5 am. As long as she is happily babbling in her crib, we let her stay there practicing for about a half hour before intervening. She really is a good baby. She is not much of a crier or complainer unless she is not feeling well. Sadly, she has not had a good past 6 weeks due to shots (twice), a reaction to bananas and to flouride, and a stuffy nose/ sinuses (not sure that it is a cold, I think it is just winter sinus dryness and the saline drops just are not doing the trick as well now that it is just plain nasty winter here in the midwest.)

So here is a little update in photos:

Olivia is 9 months old as of February 5! She is functioning as about a 5 to 7 month old due to her Down syndrome. We feel good about her slow but steady progress.

Olivia has gotten to be a handful in her infant/ toddler tub, so bathtime became a nightmare until we found this tummy tub! Olivia loves it and so does Mommy! We found it at Moms4life.com. She is safe and calm! Yesterday she was feeling rather punk, and very much welcomed her soothing soak in the tub. I think the steamy bathroom did both baby and mom some good!
Olivia is very expressive and is very social. She is most definitely communicating with us!
Olivia's supported sitting is going very well these days. The therapist says that Olivia should master sitting independently before one year old! We will all welcome this milestone. Olivia is so ready to play by herself in a seated position! We are so pleased with her torso strength that is enabling her to sit so upright. Olivia was born extremely low (muscle) tone. We have worked tirelessly to strengthen every muscle of her body. We had read that babies with Down syndrome tend to be floppy. Well, Olivia took floppy to new levels! She also has joints that are extremely loose, so we need to build the muscles around the joints for support. Think about extreme double jointedness! That is the best way to describe it. The positions she could get herself into if we let her would blow your mind!
Olivia is enjoying playing while on her tummy these days. This busy box recommended by the physical therapist has come in handy for motivation during so many therapies including tummy time. She has enough strength to support her upper body with only one arm. My how far we have come!
This exercise peanut has been a wonderful therapy addition. We use it for supported standing, supported kneeling (pre-crawling) and for rolling on her tummy (pre-crawling). Mommy is getting a stronger torso from all this exercise, too!

Olivia is a pretty good sport about exercise, but she is not afraid to tell us when she is "enough is enough already"!
Hoppity Horse provides great exercise opportunities! It motivates her to supported standing.
And it motivates her to work on torso strength and balance. And! It is fun!
Eating is going well! She has now begun to try eating small chunks of soft carrots and yams. She has no teeth. So she has to chew with her gums. It had not been going well at all, but now we are doing pre-feeding exercises and adding a bit more moisture and today she took 20 pieces in a row and chewed and swallow like a pro!
Olivia drinks out of a shot glass! In fact, she has her very own personalized Notre Dame shot glass! This is what every Irish baby needs! I think this qualifies as college- prep! Thanks to goddad, Uncle Eddie.

Olivia also has her very own set of nursery rhyme shot glasses (two of them personalized) thanks to her godmom, Aunt Connie.

Evaluation updates

Over the course of the past 6 days, Olivia has had numerous evaluations: Pediatrician, Physical Therapist (PT), Occupational Therapist (OT), Speech Therapist (ST), Infant Toddler Teacher, and then finally today the Child Psychologist doing the Bayley Developmental Assessment. Yes! We have been busy!

Olivia is on track in all areas for a typical 3 to 5 month old, except for her head and neck control. The head and neck control is being delayed by weak muscles in the front of her neck and chest. We keep working on the exercises and continue to have patience. It will come, it just comes more slowly than with typical children. But we are thrilled that in all other areas she is on track! The Cognitive Evaluation was also very positive! She has such good use of her hands, and eye hand coordination, in addition to concentration that it was easy for the Psychologist to assess her cognitive development. (at least that is what she told us) Although we have been told that at some point kids with Ds fall behind their peers, we are not seeing it yet. As someone with a background in Montessori Education, I will just keep believing in her potential and trying to provide her the best environment in which to develop to her fullest potential. Olivia is exciting to work with and watch. The toy she is playing with in the photo is her current favorite toy. She plays with both hands, brings it to her mouth, studies it, drops it and picks it back up again and throws it :-) .

Today we watched as she purposefully rolled from her back to her stomach. She had been having difficulty with this move, as her head simply did not want to go the rest of the way over. When she has been laying on the floor and practicing, Daddy and Mommy have sat by quietly in the background with silent cheers so as not to disturb her concentration. It was so awesome when today as we watched she actually did it! We quietly high fived it! And watched her as she enjoyed her tummy lying position that she had achieved all by herself! Reminds me of my niece who is famous for saying, "I do it myself!" We think Olivia will be an "I do it myself child" also!

The blood test to check her hypothyroidism is next week. We will be surprised if it is in the therapeutic range. Some days I feel that it is and other days I question it.

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.

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.

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