7/31/2009

Adjustments

Bad Mom!!! There was still an electrode hiding under her armpit!! I showered her and never saw it until tonight!!!



Isn't that a gorgeous profile?

Caramel Dancing in the car!


It's crazy how a little girl can have such major life altering surgery and be understandably uneasy about her new appearance one moment and then just forget all about it and be the same sweet and spunky little monkey she has always been the next moment. Even when it has to be painful! It may be hard to understand, but it is definitely where Sera is at right now. I was so glad to see her enjoy being with good friends to night!! I am adjusting to her new looks too! ( I could easily be on the autism spectrum with how much I dislike change with certain things in my life....) However, changing my precious little doll was the right thing to do, I know. She knows it too. I think she is beginning to like her new looks too. She was a "fashionista" again tonight and was flirting and teasing just like before!

Dr. Patel and the others did such an amazing job! I am in absolute awe at Shriner's gift to this little girl. It definitely is going to change her life in so many good ways. We may be adjusting inside longer than I think it is going to take for these stitches to heal! The swelling is really going down quickly and it is not bleeding as much as they told me it would either. I think both Sera and I better adjust FAST!! Somehow, I will bet that she beats me, though!

Audio books

I would have never considered myself a fan. I love to read and used to be able to devour a good book in a short amount of time. I was actually quite a speed reader and I loved traveling with the plots and characters in my imagination as a great escape from the trials of the work day. It was so much better than TV ever could be. I picked up a book and read for pure pleasure every day.

Hmmm.... until about 11 yrs ago and then I would read on weekends etc.... then 3 yrs ago, that turned into about once a month. I would pick a good book to read each month. Then when Sera joined the family and I discovered the joy of reading blogs.... Well, I have had three books I had planned to read over my summer break. Only one is read!!

Aubri had a vision convergence issue in 2nd and 3rd grade and she had needed to read while listening to the book to help keep from getting headaches. She has continued with her love of audio books and loves to read this way when we are in the car or waiting in offices etc. It makes her look cooler with the ear buds in her ears, I guess. She is a good reader, but she says that she enjoys the drama a good reader gives the texts. She is a drama fan, so that made sense to me.

This summer we have been listening to many kids audio books in the car and at bedtime to help Andy with his vocabulary and sentence structure. He will say things the ODDEST way! I have actually enjoyed listening along with them!

Then I realized that I can listen to my own audio books while I read online!! WOW!! The best of two worlds!



My favorite has been one I read about, recommended by another parent, and I just have to share it.

Delivered From Distraction-Getting the Most out of Life with Attention Defecit Disorder.




I had been actually reading The Gift OF ADHD while in airports and hospitals etc..to help figure out my sweet and very busy little boy and while it helped some, the above book written about adults helped more!

Here is the one Aubri has loved most this summer .

Andy has loved the Magic Tree House Series the most.

Sera loves..... can you guess???

..................

Fancy Nancy of course!!!!

Oh, and a lot of the kids favorites and my choices are on our state online library!! Check out for 2 weeks!! Perfect!

I am a fan now!

7/30/2009

Scary stuff!!

Normally I keep my political views to myself, but WOW!!! This is terrifyingly scary stuff Obabma is trying to shove into place!!! This means that not only will my students be on the cut off list for medical treatment when labeled and non contributing members of society, but so will I also be old someday and will also be labeled as non contributing... and just allowed palliative care... I understand needing to balance a budget, but this is so far from where we thought that American's have been heading.....

NO photos MOM!!!

Well, Sera's face is looking better and better! It is no longer lopsided and she looks like she is going to have a precious little bow mouth. It makes her look so dainty and delicate. Sadly, she is not as in love with it and has absolutely refused to let me photo it today. She did spend about an hour in the bathroom mirror, getting to know herself again, however, so maybe tomorrow she will not chew me out when I get out the camera :-)

Keeping her quiet is much easier said than done. Andy and Aubri entice her to join in their play, so I had to keep them all quiet. For those of you who know Andy in person, you understand that this is no easy feat at all without the use of a straight jacket... Of course I did not resort to that, but the thought did cross my mind several times! Bad mom!!! So she escaped scraping and banging her face 2 times today while interacting with her siblings.............. Please say a prayer that I can continue to avoid the disaster of a ripped stitch!!!!!

7/29/2009

Another changed grin!!!

Photos!












These photos were taken the day of surgery. The last glimpse of the sweet little mouth we first fell in love with! I will always love this little face!!

We got home safely last night. Sera slept well on my bed with me, spinning in circles as she slept, BUT she never touched her face!! I know because I watched her all night and am soooo tired this am. Oh well! We need those stitches to all stay in place!

She is still very much her spunky little self. She was waving goodbye and telling all the passengers on the plane last night good bye, while copying the stewardesses. She was so precious!! Everyone was laughing and smiling as they got off the plane! I keep looking at her and thinking I have someone else's child with us... She thinks she is a different little girl now and needs a new name. She told the team at Shriner's that she wanted to be called " cute little muffin girl with sprinkles on top"! She definitely is a cute little muffin! We will be working on helping her learn to recognize herself.

Here is what you really want :-)
When I first saw her. I wasn't sure she was mine... Then she started rocking and I was sure!



So sweet!!!!! She still has her dimples!!!




She loved riding around the hospital in this car!! I couldn't get her to stay still for a photo though!



In the airport. She wanted to go home NOW!! She also decided that she did not want photos... I am going to have to be sneaky to get her to let me take her photo for a while, until she gets used to her new look!


When the swelling goes down, this little grin will be so sweet! It won't gather crowds to stare. This old mom is just going to miss her wide smile and will always treasure the times I was blessed to be able to share it with her!

7/27/2009

Whew!!!

I was worred about whether or not I was bringing what I needed for Sera's surgery, since I had not received any real info about what the hospital stay would be like. I had done everything the PA had asked me to do, like get the CT scan done, get a UA done, have the family physician fax health status updates to Shriner's, put Sera on a preventative antibiotic and give her daily breathing treatments.

However, in not getting the kind of info from Shriner's, like I had received from our nearby children's hospital, I worried. I like to plan in advance and prepare for potential problems. I worried about security in the airports after her surgery when she felt awful since I had trouble just last week with Sera in security at the airports, since it scared her for people in uniforms to take me away from her and not let her get near me. I worried if I would be able to carry all the bags and push Sera in a stroller on the way home. I worried that my legs, which are pretty bruised and not working well from the wreck, would be able to keep me upright. I worried, enough to decide bring Aubri with me so that I would have some help in the airports and help with Sera and the bags and, honestly, to have some company. I purchased her a ticket and she came along with us.

When we arrived at Shiner's last night however, they told me that Aubri would not be allowed to stay. I had planned on staying in a regular chair and having Aubri sleep in the recliner. They would NOT allow that. It did not matter that she was 11. It did not matter that she was quiet and responsible. Nothing mattered. A rule is a rule and I should abide by it even if I knew nothing about it and no one had tried to begin to prepare us for this surgery and the hospital requirements.

So after much ado....including me loosing my patience at being told to send her to a hotel all by herself to check in so that Sera could be admitted... We all ended up at a hotel with Sera needing to come back at 9 am. It worked out well, because Sera really loves going to that hotel and staying in the hospital all night without being sick would have bored her to tears! She loved getting a pizza again and eating late at night. For the girls it was a special treat! I was so tired from having been angry that I just greatly welcomed a good nights rest in a comfortable bed :-)

Also, our travel to and from the hospital and where we were staying was totally unknown to the person in charge of setting these things up... Evidently it should have been faxed from our Topeka office.... None of this is anything I could have prevented, even though I kept trying to arrange travel way before March.

Evidently there have been some budget cuts and everyone seems to think that the other person is sharing the necessary information with me regarding the logistics of this surgery. It really isn't the "fault" of anyone's actions or lack of action. It is just a bit of confusion as they also learn to survive these nasty budget cuts our economy has placed on people everywere. So sad!!

The surgeons, however, have been wonderful and kept me very in the loop with what they are needing to do. The are wonderful and I know they will do an amazing job. Much better than I could have done near home.

Every year at work, I am reminded by a sign given to me byone of my university professors to stay flexible and roll with the changes to best be able to handle them. I know that it is an important skill in the field I teach in. I hadn't carried it over to home life much though. Now I am taking that advice to heart daily in my own personal life now!! I must need to learn to be more flexible however, because I keep getting these "lessons" on a regular basis! I am going to learn how to not need to plan for every action and just try to breathe more deeply when I don't know what is happening :-)

Sera is in surgery now. She went in about 2:20. She had to wait all day with nothing to eat or drink. She was such a little trooper!! She would ask me for food often, but would accept not yet for an answer and go back to watching a movie on the computer or even snoozing on the bed while waiting. It was a horribly long day for all of us, since Aubri and I also fasted with her and were also both nervous about her upcoming procedure.

Evidently she will be coming out of surgery soon, within an hour. The nurse report is good. She says that she looks very different now and to be prepared to not recognise her.... :-( I loved the little face that she had. I know we will also love her new little smile, because honestly, her lip shape does not define her smile. It is her pure little joyful spirit that shines through!

I will post photos as soon as I can. This computer does not allow uploads of any kind.

7/24/2009

Andy's testing done!


One step forward! Aubri, Andy and I left Sera off with Grandpa at 4 am so that we could get Andy to the children's hospital and have him checked in at 7 am.

I drove our newly acquired little RAV4 in the dark all the way there! That would normally not be a big feat, but since last Thursday, I HATE driving! I keep replaying that crash and seeing Aubri next to me struggling to breathe with her beautiful blue eyes bulging in fear.... Every car that passes me or moves around me as we go through intersections and mostly as we pass parking lots, sets me to extreme hypervigilant mode. I needed no caffeine, since my own adrenaline was working quite well! But by the time we got there, I was worn out!!

Andy was a trooper and loved getting to play all the video games there. He especially was interested in a Lego game. The exam rooms had animal tables. He had a beluga whale and we could see a dinosaur across the hall. It was kind of like going to an amusement park! He was quite happy to get ready to breathe his strawberry gas and take a nap. We went to the waiting room, which was was super decorated as a forest, complete with large trees for lighting and tables looking like mushrooms etc... There were lots of families there waiting for the little ones. Some were extremely distraught, some were checking their notes on what they needed to do and others looked like they had done this before and knew the ropes. I learned that some families get really distraught over little things, since I tried to comfort a lady who kept crying and pacing and discovered that her child was just there to have a tooth pulled under general anesthesia. The thought of him being in there with people she did not know just had absolutely terrified her. While I had been nervous about driving, and really felt for this lady and her fears, I was sooo glad that I trust Andy's doctors and was not dealing with that level of anxiety. If I did, I don't know that we would make it through all the things he and Sera will be needing in the next few months!

Andy's testing after the testing the Dr did in the OR, while he was awake, was much less pleasant for him. He was VERY uncomfortable. He was a good little guy, though and did what they told him to do. It took quite a long time and I was surprised that he was still dizzy and off balance when he could get dressed. I had wanted to take both him and Aubri to a science museum while we were there in the city, but we decided to abort those plans when we discovered that he needed to be carried...
Oh, he also lost his first top tooth today! It was wiggly and to have anesthesia safely, they pulled it out! He is thrilled and excited about adding to his stash of dollar bills. He loves money and saves every penny! I already miss his smile, but his new grin is cute too! I cannot imagine how much his little face is going to change with big teeth in that little mouth, but as with all change I resist, I am sure I will enjoy the new look he will have! I only had my cell phone, so no good photo. He wiggled in every one I tried to take. I will get one today though!

Once we got home, he was still out of it a bit, but was mostly just sleepy. He could walk on his own :-) By the time his gymnastics was starting, he was full of bounce again! I just love watching him!

The doctor hasn't called me to tell me what his plan for Andy is and to discuss it with me. While we talked in the consultation room after the first tests, it does sound like more surgery will be needed along with some additional daily medical care. No arguments from me! What ever he needs, I will try to find a way to help him with it. I may have to explore getting him disability to help with additional medical coverage, but what is more red tape at this point? :-) He is definitely worth it!

7/21/2009

CT done!

Sera had her CT scan done this am. It had to be done twice to get the right information requested by Shriner's and since when Sera had already started to wake up from her first dose of ketamine, she had to be put under again. I had wanted her to use the gas she had for her first CT, but the Dr liked to use ketamine and said it was less invasive. It was a shot, which she hated :-( Our day has been spent trying to help her wake up without letting her fall and hurt herself. The medication has not wanted to leave her system and I know that I will not let her have that med again. Poor baby has been like a drunken sailor most of the day. She is now able to walk around without falling, but she is still very quiet and not her bouncy little self yet.

I wonder if this is a warning for what might happen when she has that long surgery on Monday...... Please keep her in your prayers!!

This looks good compared to how she looked the first 2 hours.... She was waving her arms around and batting my face like a baby. Nothing worked right for her and she would just topple over. She was a floppy headed newborn for the longest time while waving her arms reflexively. They kept telling me that she was looking at her rings. I knew better... She was not even looking in their direction. It broke my heart. Next CT scan, I am only going to let them give her a little bit of gas to calm her, nothing else!!!

7/19/2009

Sera's CAKE Party




Sera had her CAKE party! When we returned from Shriner's on her real birthday we had a dessert at the restaurant while the waiters sang to her and she basked in the attention. I wondered if she would remember that she had asked for a princess cake every time we went to the grocery store for the last 6 months, and of course she did!! In fact, she reminded me as we walked out of the restaurant and practically every waking hour since!

So we asked a few of her favorite adult friends and some of her kid friends to share some with us at a local pizza buffet. Sera could not wait to rip the tiara off the cake! She tried to take it off as soon as I opened the box!! She finally understood that she could have the bling, only after she had blown out her candles, so it was still on the cake for the formalities :-)

She was given all kinds of BLING and is definitely considering herself quite fashionable. As she would put it, she is a "fashionista" ?? Aubri tells me that she heard this term on TV and she has hung onto it! She is definitely an all frills kind of girl!

When I went to check her a few minutes ago, she was trying to take a nap on a new sleeping bag, given to her today, while blowing boa feathers away from her face and adjusting her bling. As soon as I went to get the camera, though, she woke and fussed at me for trying to take a photo of her sleeping. Drat!!!

This little one is so spunky!

7/17/2009

A fitting quote to live by


Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denials into acceptance, chaos to order, confusion to clarity. It can turn a meal into a feast, a house into a home, a stranger into a friend. Gratitude makes sense of our past, brings peace for today and creates a vision for tomorrow. - Melody Battine

'Found this quote somewhere online and copied it to my files, but for the life of me I cannot find where it came from. I found it by chance again today, with a bit of Guidance, I am sure.

While the kids and I actually cried today as we took our belongings out of our mangled car, and I was frustrated calling in the claims and coping with the arrangements for it to be evaluated and eventually - I could not help by cry in relief that I was not making funeral arrangements.

BIG difference!!!

We are definitely grateful this quote popped out at me and are going to make every effort to live it. Each time I start to feel vengeful and angry about our car situation and our aches and pains today, simply remembering that I have my kids and the abilities to regroup, I must be thankful! We all need some peace.... The fear and frustration have been more chaotic than we could imagine and we really need to move forward into the next week of Dr appointments and surgeries with some order and a sense of calm...

I am sadly being very human and am having to remind myself constantly of how blessed we are since I am not doing so well at forgiveness..... I know that must also come for us to all move on .

Hug your loved ones!

Last night we were T boned forcefully, by a driver who did not even stop at the entry way from a parking lot. He just barreled out of it without stopping to check for traffic and right into us. We were on our way home from gymnastics and were not far from home at all. There was nothing I could do to avoid it. He hit the passenger side doors head on at at least 20 miles and hour when I was traveling 30mph. It crushed into passenger side and and Aubri had the wind knocked out of her by the airbags. She could not breathe and all I could do was try to figure out how I was going to do CPR on my own daughter with my legs stuck under the steering wheel...

Several bystanders came to our aid, and one gentleman came to my door to tell me that 911 had been called. My cell had been thrown into the car and I could not find it while trying to calm my kids. Andy was screaming that he hurt is head and Sera was just screaming. Aubri was able to breathe before she passsed out and was just sobbing quietly. I was trying to keep them calm while the EMS extricated them from the car. They had to cut the car open to get Aubri out. Grandpa came and Sera would not let go of him. She would not let any EMT touch her. He drove her to the hospital. Both Aubri and Andy were transported via ambulance on backboards, and I could not go with both of them because I had injured my leg and they wanted me checked out too. Aubri was a sweet big sister and actually told me to go with Andy. My bloodpressure was 176 over 100 so I guess they were right in deciding to play it safe. The EMS workers were so nice and gentle with my kids! I am so grateful to them!!

I saw the driver of the big white Ford Explorer that had crashed into us walk around the car, when the kind man who had called 911 for us pointed him out to me. The driver never spoke to me at all. He just stood and stared at us. I hate to be judgemental, but he truly looked like a lost soul, with a very glazed look, stringy hair and an unbuttoned shirt. My first impression was that he was stoned or drunk. I may have been wrong, but the EMT's seemd to all be under the same impression. He refused assistance however... Who knows. The police gave me a victim's sheet with insurance info and I can get a police report in 5 working days, by paying 5 bucks for it....

We all are fine and got to come home last night. We are banged up and bruised and I had to watch Andy for head injury, Aubri probably has a broken rib and I am limping more than usual, BUT even if we are all sore, we are all together!!! I am so blessed! If we had been in a smaller car, or the kids had not been restrained correctly, the story would be very different.... I cannot hardly imagine it without crying...

We go see the car today and empty it and send it off to the insurance lot. I honestly did not look at it yesterday. All I could focus on was my kids cries. It makes me so sad to lose it and have to take on a car payment and insurance deductible, when I don't have the funds to do that without making big cuts in a budget with little room to cut, BUT my kids are happily munching on chips while watching Pokemon right now and I am able to hug and kiss on them all I want.

Please hug your loved ones and let them know just how much you love them! A split second can really rob you of them forever! We are all very acutely aware of that here today.

7/15/2009

I just earned a $5 Amazon gift card by using Swagbucks!


Search & Win


It isn't hard a all. In fact it takes no effort at all! Just install the Swagbucks toolbar ad use it to search online. I search lots of things to find out more about them, so this equals really easy money! Any extra money I can use for things I would buy regularly is exciting news for me!

It does not install spyware or viruses. I check that all the time. Click on the picture above and try it!

Pre Op visit- part 2


First of all, I guess I had better explain what type of cleft Sera has, so that those reading, who have not followed Sera from the start can understand why we are at Shriner's. We have a great Children's hospital just over an hour from home. We are traveling all the way to Chicago for a good reason. Sera does not just have a cleft lip and palate, she has a Tessier 4 cleft. (Craniofacial clefts are rare among facial anomalies, with an incidence of 1.5 to 5 per 100,000 births, and 1 per 100 cases of cleft lip and palate. The Tessier No. 4 oro-ocular cleft is one of the rarest, with 33 unilateral and bilateral clefts reported in the literature. Among the bilateral clefts only 3 of 9 involved Tessier No. 4 cleft bilaterally.) I was told that Shriner's would have the most experience with this type of cleft repair and would also be able to follow her for complications should anythng come up. So far they are everything I had been told. they have just been wonderful with her and have not treated her like an oddity for everyone to come examine, while leaving her feeling like a circus exhibit. They have treated her like a princess and I feel very comfortable having her in their care. It will be well worth all the travel time!

Well, it wasn't easy waking int the am after such a late night, but yet it was, since I woke at 5 am and could not go back to sleep. I was so tired, but couldn't fight routine. Our room was facing the street and I kept listening to the traffic and then going to look! I love different sights and sounds. I really enjoyed watching all the dog walkers. Not just folks walking their own dog, but actual dog walkers. There must be lots of dogs in the apartment complexes around the Inn. It was so nice to be able to fix a cup of tea and just sit by the window and watch life go by.

Sera slept peacefully until 8 am when I woke her and sang Happy Birthday to her. She was all smiles and very excited to put on her new birthday cake dress and tiara. We ate in the room, since I had brought oatmeal and we had left over pizza. She was excited to got downstairs and explore, but not so happy to get in a cab to go to the hospital. In fact she refused to even get out of the cab until I distracted her with a fish statue in the lobby.

The hospital staff were so sweet to her and really helped ease her fears. We met with the doctors and found out that Sera will have a lip revision and a bone graft into her jaw, from her ribs. They are not going to work on her sinuses or cheekbones yet. In fact she will have to go back for another lip revision in about 8 months, since her lip repair will not be able to be done in just one step. We will have to gt another CT scan this week and have some other pre op things done, like put her on preventative antibiotics, since she has a cough. With waiting this long for surgery, we don't want to have to reschedule it ! :-)

BTW, once again I was told that she should have been receiving speech therapy at school... The SLP laughed when I told her the reasons I had ben given as to why they could not do anything for her until her lip was repaired. I was told that it is only because they do not know what to do that I was given these reasons... How is a parent supposed to make decisions and know what to fight for or how with two such strongly opposing opinions!? Especially since I also work for the same school district! When school starts, she will be in contact ith the new SLP at our school and try to help. I wish she had done more of this before now though!

Sera was so totally spoiled by the staff there because it was her birthday, I think she will want to go there every year for her birthday! She raked in a new HMontanna backpack, and Ariel doll, and DreamScene Doll, a CD, a Carebears video, flashcards and at least 4 activity books. She was so happy playing and telling everyone she met that she had a birthday.

We caught a cab back to the airport and instead of waiting to get on our plane at 6:45 in the evening and just hanging around the airport, I requested standby to get home sooner. Since our plane was running late already ( how they knew that at 1pm, I won't know, but am very glad they did!) After waiting for one lane and rushing to the next, we got on and were home before we should have left :-)
Meet the newest member of the Chicago Mob!

Mmmmm 5 dollar airport drinks are yummy!! At least she loved it and actually drank it!! :-)



Sera was thrilled to see our family at Applbe*s waiting for her, to celebrate her birthday. She loved being sung too and was so excited to be 5!!!

We then came home to crash!

Now I am making arrangements for all her pre op stuff they need in less than 2 weeks. I hope we can get a CT scan done that fast!!


Isn't that the most beautiful smile!!! I need to remember it! I know it will be more "typical" in a few weeks, but I think her Father made her perfectly!!

7/14/2009

Chicago - pre op appt, part one.

Well, after waiting at the airport for over 2 hours for our flight, which had been delayed in Colorado, we finally got on an hour and a half flight to Chicago. Sera was a happy camper and was very excited the whole way. She could not wait to put down her tray to watch her new Barbie movie. Once we got to Chicago, however, she decided that she wanted to be at home and was asking over and over again if we were going home now. She wanted to see Aubri and Andy and was done with the airplanes. She would settle down when I told her that we were just seeing the doctor in the morning and would fly home again right after seeing him. This would be OK for about 5 minutes and then she would ask again. Our taxi driver asked who Aubri and Andy were that she had to get home to them. It was sweet.

We are at the Write Inn in Oak Park. It is a nice place to stay. We were here the last time and once again when I requested just a queen size bed, the cheapest room, we were upgraded to a family suite. I think it must be because we are a Shriner's family. Who knows! It is a nice room with a kitchenette and a sitting area and 2 queen size beds. Some day it would be a nice place to stay with all the kids and just go exploring, but... I don't know when time will ever allow for that, or the funds to just come here to play would appear from :-) So for now, we are just enjoying it for what it is. We ordered delivery pizza last night when we came in from a nearby Itailian place. Oooh, it was WONDERFUL!!! We still have some in the fridge for breakfast! Artichoke, spinach, chicken and all kinds of gooey cheese... Good stuff!

Sera will be up in a few minutes, since I am going to wake her :-) She was so tired from the traveling yesterday and all the excitement. I hope traveling home today goes as smoothly though. I can forsee her getting impatient with getting HOME. I am trying to imagine making this trip home with her face so swollen and sore though and I have to admit, that scares me much more! We will just have to wait and see.

7/09/2009

Stinkyfeet

Our local public library always has lots of great kids entertainment programs during the summer. My kids always want to participate :-)

They have read their 20 hours, either on their own or with me reading to them and have earned lots of free food treats and last night they got to pick out books. Sera got one about Pandas, Andy got a Junie B Jones and Aubri got something I can't remember... but then that's not too shocking since she actually looks though the books and makes her own choices without my having to redirect her to something more at her level :-)

Mr. Stinkyfeet, Jim Cosgrove, put on 3 shows yesterday and we caught the evening show. His music is very catchy, he is a great entertainer, and the kids just love him. I especially like him, because the summer Andy first saw him, he thought all librarians were called Mr. Stinky feet, since the children's librarian is also a man and he also plays the guitar and sings with the kids. When Andy first sarted school, it took him several months to figure out that our public librarian was not Mrs. Stinkyfeet! He shocked her several times by calling her that!

I love free quality entertainment for all!!! That said, here is a video of Andy and Sera dancing in Mr Stinkyfeet's band for you to enjoy :-) * If Andy looks a bit sad at times, it is because he is feeling bad that Aubri did not also get to go up with them. They may squabble, but they do love each other fiercely!! Seeing him look sad for this reason actually makes me smile. Oh, and the cows chewing their cud imitations were definitely not planned. I had given Andy gum so that he would be able to sit more quietly without moving into his neighbor's spaces. Of course Andy gets nothing without Sera wanting it too!

7/08/2009

VATER???

Nope, in this case it is not the German word for father.

When the technologist called me yesterday to discuss what would happen when Andy has his ur*dynamics study and his cystosc*pe done, she dropped this word as what Andy has been diagnosed with. I told he very quickly that she must be looking at the wrong child's file, because my son did not have that dx. He just has repaired hyp*spadias and related complications along with repaired an*l atresia and constipation issues.

WRONG..... Evidently he had been dxd with this last year, but no one had bothered to share that information with me, or what it meant for Andy.

I am still waiting for a doctor to explain this.

I did some reading on my own and it sounds like it is just a name for a bunch of different birth defects which may or may not be present. As far as 'I can tell from what I have read, he has the A and the R. With the additional possibility of needing to catheterize him every 4 hours looming ahead of us following these tests, I am definitely praying that this poor kid will not have to endure much more..... I want someone to explain why this is on his chart though! He does not have any of the other issues.

I just wish the doctors would not have assumed that I knew what he needed. I obviously do not know why he has these problems or how to solve them when I took him in for them to help me! I so hope that they tell me more SOON!! Not knowing what medical things I should be watching for with Andy is worrying me and I am feeling like a pretty lousy mom right now...

5 hours later .....

PS... Andy's doctor called me this am and told me not to worry any more. The VATER dx was just because of the 3 symptoms Andy has ( anal atresia at birth, hypospadias and mild urinary incontinence) and he seriously doubts that he will have others. They would have been much more obvious at birth and shortly after.

In other words, VATER is just a dx given to any child with more than one birth defect. It does not imply that he will have more to deal with or that I am going to be clueless about what to look for! I freaked out for no reason.

Whew!! I can easily cope with the rest and it has all been explained very clearly :-)

I keep wanting this parenting thing to have an instruction manual and need to just take it one step at a time. I love this boy so much and just need to sit back and enjoy him!

7/05/2009

Lessons in physics









Our Fourth was pretty simple and we stayed at home. We watched a movie and played on the Wii when we came home from eating at grandpa's. We really enjoyed celebrating with him a bit. The kids just love being with him and their excitement is contagious. He went to the Kelly house to spend some time with Evelyn and avoid all the noise, heat and confusion.

We did not eat elaborately, but we enjoyed making and eating grilled hamburgers, squash, chips, watermelon and homemade chocolate chip cookies and popsicles while sitting outside listening to the neighbors make our subdivision sound like it was under direct artillery fire... The kids loved every boom!

Poppers, sparklers and just a few little fountains were the extent of our pyrotechnics this 4th, but our neighbors were very kind to share their fun and put on a huge light up, boom, boom pow show! It never ceases to amaze me how large the displays are, in the city limits no less!

Confetti is much more fun when you can shoot it onto something and Sera seemed to be a bit confused as to how to aim, at first, but after a few shots, she was decorating our garden right along with her siblings. Our tomato plant became our Fourth of July "tree"..... They were quite proud of it!

Aubri did a wonderful job lighting our little fountains, but the wind defintely posed some challenges. She figured out how to compensate though! The sparklers were blown out almost as soon as they were lit, but they all figured out how to put their backs to the wind! Motivational learning!!!

The wind added other concerns, however, because it would seem that some of our neighbors were not compensating nearly as well as Aubri had and the large, sky high, spark shows were blown into our house several times. Good thing we had just had a good rain! I was a bit nervous and kept my cell phone handy and the kids under the trees when the big shows were going on.

Then the kids had a blast in our new hammock while we watched the neighbors parties. I had told them I would buy it, rather than a bunch of fireworks, because it would not blow up and I knew our neighbors would entertain us :-) They had so much fun trying to get all 3 of them on it at once! Once they managed to get up there calmly and stay on for a few minutes, of course the wiggles and goofies got to them and they would spill out! When they got to bed, they were BEAT! They slept soundly through the remaining explosions, which lasted well past 2 am..... Mom is not so well rested today :-) 'Good thing the fourth fell on a Saturday!!

BTW, The dogs were very happy to snuggle and cuddle with us all today. They are very glad there are 365 more days until this happens again! BaoBao was the only one who did not hide and thought it was no big deal !

It is always nice to celebrate Independence Day with my kids. After being stuck in Ch*nese police stations and having seen someone beat and treated like an animal, Aubri understands a small portion of the freedoms we have here. Andy and Sera's futures are both so different here, with being able to be citizens, where in their own country they would never have had the privledges of even being abe to attend school with peers who were not orphaned. It is hard to see our economy under such duress right now, but is is so good to be able to count the blessings we do have!! So many people in this world are not sharing in the blessings we can so easily take for granted.

We hope you were able to enjoy some holiday fun too!!