The Heflin Family

She dances :)

2012-02-17T18:53:00.000-08:00

Yesterday afternoon Addy's dance teacher called me to let me know that the girls were dancing during half-time at the JV basketball game tonight! Addy hasn't been to dance in over a month since she was in the hospital for two of the days, we traveled to St. Louis the next and we had a snow day this week! Jennifer is so sweet and wanted to make sure that Addy was included even though she had NEVER heard this music or seen the routine :) Jake was singing The National Anthem before the Varsity game so we had to be there anyway so I said she would be there :) I'm so glad I did! Addy's precious little friend, Halle, who is too cute and sweet for words was sooo excited to see Addy! They hugged and hugged :) I told Jennifer that we would have a better chance of Addy participating if we could leave her shoes on and she was totally fine with it :) I did at least put on her sparkly Chucks for the occasion :) Addy was too cute!! She waved her arms a little bit like the others but mainly just stood there and smiled and waved :) We were thrilled she was at least vertical this time!!! We are so blessed that Jennifer is in our lives and loves and accepts Addy for who she is and loves to work with her :) I can't wait to see what the Spring recital will bring!

Busy Girl!

2012-02-16T17:45:00.001-08:00

Addy's been a busy girl! We didn't have school Monday or Tuesday due to snow but went back right into party day :) Addy had a blast at her Valentine's party :) It was a Hawaiian Luau theme :) She rocked her hula skirt!

A little cookie decorating :)

Addy toddled over to her friend's table the other day and proceeded to pick up her Capri Sun and start drinking away! Needless to say I immediately bought her some and she has been doing fantastic drinking them! When this girl sets her mind to something she goes to town! She doesn't drink much, but it's a HUGE milestone for her! These are tiny straws! One of the last we present when working on straw skills!
The kids also got some mini bananas. Look what she did! Looks great huh?!?! Well after getting a minuscule amount in her mouth she immediately threw that banana across the table!

Addy loved the knocking down the Red Solo Cups (which Addy kept singing during the party! lol) They had heart shaped marshmallows and were supposed to throw them at the cups. Addy put hers on top of the cup and started clapping :) You rock sister!

This was a toss the fish in the basket game. Addy changed it to, walk up to the basket and put the fish in it, then clap wildly game :) How I love this girl!

Bowling with coconuts :) Some of our boys were pretty powerful with their tosses! How we didn't have coconut milk all over I have no idea!

This is Ms. Debbie :) One of our most favoritest people ever!!!

Tonight was the first of several kindergarten transition activities for the class of 2025 :) We went to Taste of Hubble for our first event. Addy had a paper with a bus on it to collect stickers on at all of the places she visited. Since Addy already attends Pre-K at school she was very comfortable! She had to walk a REALLY LONG WAY though and it definitely tired her out. That's going to be an issue next year. Hopefully by then she will have more stamina but those hallways are super long for those tiny little legs!! We are beginning Addy's evaluation for kindergarten as well. I'm not too worked up about numbers, I get it. I'm pretty sure we won't have a completely accurate picture of Addy's abilities but you never know. It just depends on the day! I know there are several things that we want for Addy's kindergarten year. I'm not going to get into them now, that's for another post after her eval.
Addy and Abby :) She's our Computer Lab teacher :)

Walking and walking and walking down those long hallways!

Addy and Nurse Vicki :) She's going to get to see her everyday! Tube Feedings ;)

Awful pic, but Addy riding the big bus with Daddy :)

My girl is going to kindergarten :) Bring it on!

Getting Dressed

2012-02-14T09:13:00.000-08:00

We have really been working on Addy's independence lately. She always wants to do things herself, however, her size and lack of motor skills impede her progress. Since she will be going to kindergarten in the fall, independence is super important. So... she is responsible for hanging up her coat and backpack and putting her snack away at school. We had to give her extra hooks in her cubby, she was too short to reach the other ones :) She has a difficult time using both hands together and tries so hard to hang her things up one handed. Once we get her to use both hands she can usually do it.

At home we are working on her dressing skills. She can take her clothes off pretty well but putting them on is more difficult for her. The other day I put her in the family room and tossed her clothes to her to see what she would do. She always tries to dress herself but I usually have to intervene :) Check her out :)
Whoops, this is my shirt, not my pants!

Ta Dah!!

You go girl!

Don't forget! I am trying to get free 31 Gifts products so I can do a give away for Reece's Rainbow :) Check my previous post or click HERE to order away! Items will be shipped directly to you! Things are able to be personalized and they have so many cute patterns! I love their stuff! If you order $31 worth of products you get 31% off another item so think ahead for adorable gifts!

31 Gifts :) Updated :)

2012-02-10T14:47:00.001-08:00

If you haven't heard of 31 Gifts you are missing out! A very good friend of mine, Amy Pena, is a consultant for this wonderful company! They are a Christian based company too which I love! Amy and I share a classroom and it's quite dangerous for me! I love their stuff! I finally broke down and scheduled to have a party on the 21st of this month. I never have parties because no one usually comes! However, I am throwing this out to my blog world community to order online :) I am hoping to earn a lot of free products so I can host a give away for Reece's Rainbow :) THIS MONTH'S SPECIAL IS SPEND $31 GET 31% OFF OF ANOTHER ITEM! THE MORE YOU SPEND THE MORE YOU SAVE! $62, 62% ETC!!!

I'm attaching pix of all of my products (and my new favorite, my new lunch tote!) that I have and some others that I think are great! I would LOVE to have an organized pantry like this:

My new insulated lunch tote :)

Addy's lunch tote that holds her big shaker of formula and all of her feeding supplies, including a can of formula if we need it.

Addy's "diaper" bag :)

I use this bag everyday, I LOVE it!

This is my big treat! It's a rolling tote, it has been very handy for all of my little trips!

Unfortunately this pattern is discontinued, but it looks oh so cute in Addy's playroom. I have two of these that hold play doh, markers, chalk, sensory stuff etc.

LOVE these to hold toys!

My Large Utility Tote! I love this thing too! It holds sooo much stuff! It is perfect when we go to the pool or lake, holds towels, sunscreen, snacks etc :)

Addy's dance bag :) It could easily be her backpack but we keep it all for dance stuff right now :)

So click HERE and order away! Things will be shipped directly to you! Think ahead and order gifts! You won't be disappointed, these products are wonderful! The more you order the more the more will be in my Give Away!!!

Here are just some pictures of other items just to give you an idea :) The complete catalog is available on the website :)

Yearly Visit

2012-02-07T15:30:00.000-08:00

Weight 28 pounds :)
Height 36 1/4 inches :)

ENT chair, she was beginning to fade!
Playing with the beads at the Eye Center. She is finally playing with things!

Last night Scott, Addy and I headed up to St. Louis for her annual whirlwind doctor visits at St. Louis Children's Hospital. I love that place! We had an eventful evening in the hotel. My poor hubby has SEVERE sleep apnea and has not had a sleep study done to confirm this or get put on a CPAP machine. He needs it desperately! I forgot my ear plugs and could not sleep at all! Neither could Addy :( Finally at 4 am I took off in the van with her to let her get some sleep. She did fall asleep and once she was good and out I parked us in the parking lot and decided to just sleep in the van but then I was afraid that the battery would run down so went on back into the room. Fortunately, Addy was able to fall asleep so she go at least a couple hours of sleep last night!

This girl is absolutely amazing, with no sleep she was still an absolute angel at all of her visits! We started at the Down Syndrome clinic and got some great information on new guidelines for things that need to be checked with our chromosomally enhanced kiddos :) Addy showed off as usual and was quite the charmer :) No one could believe that she was just released from the hospital a couple of weeks ago! They were very impressed with her cognitive and language skills :) Motorically is a whole 'nother story :( She was excited to hear about Addy's toilet training progress as well. She has definitely regressed since being in the hospital but we are getting back on track :) Poor girl still has a horrible yeast infection from all of the antibiotics she had in the hospital :(

After the DS Clinic we headed to ENT. She was being very silly waiting for the doctor! He looked in both ears and felt that the tubes really weren't where they needed to be. After holding her down and doing a little digging while looking through the big microscope, both tubes were removed with a pound of wax! He felt that since we don't have any hearing concerns he didn't feel a repeat audiogram was necessary since the one from last year was completely within normal limits. This was fortunate since we were already 20 minutes late for her orthopedic appointment! He discharged her from ENT unless she starts having repeat ear infections again :0

We got to Orthopedics and they were running really behind so it wasn't a huge deal that we were late. Gross motor skills are definitely Addy's biggest weakness. When watching her walk the doctor felt that her ankles were turning in and was anxious to see what the Orthopedic doctor had to say. Addy's gait is still very Frankenstein. She is just beginning to bend her knees when she walks. Addy currently wears JumpStart Cricket inserts which just fit in her shoe and don't support her ankles. Her orthotist in Springfield is hesitant to put her back into Sure Steps since it would make her have to use fewer muscles and when she wore them before she wouldn't even stand in them. The doctor x-rayed Addy's hips again and they are still as good as they are going to be since she was such a late walker and she is one of the "loosest" kids she's seen. Addy's feet can completely bend to her shin, I can't imagine! She watched her walk and completely agreed with our current Orthotist and doesn't want to brace her anymore than she already is :) However, Addy gets 1 hour of PT per week and both doctors agreed that she needs at least double that. I really doubt we'll be able to get it through the school so we are hoping we can get her home health agency to provide PT in the home. If not, we will take her to the same clinic we go for feeding therapy. We go back in 9 months to a year.

We then went onto Ophthalmology. We were sent a letter that her doctor would be out and they were scheduling us with another doctor. I really like her first doctor and he was there so I don't know why we had to see the other guy. He was fine, I just kinda liked the other doc better. Addy did fantastic during her exam even though she had been all over the place and was getting hungry and tired! He wasn't concerned with her eyes crossing they aren't any worse than last time (I guess they take really good notes on that!). He dilated her eyes and we went to the lab for her blood draw. It was so nice having Scott with me so he got to do all of the holding down torture procedures today! She was a trooper and barely shed a tear! We went to have her eyes looked at and she was so tired she was almost asleep! He said that her eyes aren't quite as bad as her current prescription is for! An improvement, yeah! He said that we don't need to change her script unless her glasses break, that the current script isn't going to hurt her any. He does want to follow up in a year.

We spent just 4 1/2 hours there and got so much done! Poor Addy was soooo tired! She was asleep almost instantly in the car :) I let her sleep the entire ride home since I knew she was sooo sleep deprived! I'm hoping that she will go to sleep pretty easily, I am exhausted too! I don't do well with no sleep!

FOR SOME REASON BLOGGER WOULDN'T LET ME MOVE THE PICTURES! SORRY!

:(

2012-01-29T18:01:00.000-08:00

Addy is really not liking her tender grips. She ripped off the flaps today so we had to take them off :( I didn't put them back on her today to see how she would do at nap. She fell asleep on the floor in the family room so I just hooked her pulse ox up and could see it :) She did just fine! Stayed 92 or better while she slept! So we are going to try no O2 tonight to see how she does :) REALLY hoping she stays above 90 so we can stop the O2, her cheeks already need a break!

Ugh

2012-01-27T16:04:00.000-08:00

Last night was just plain awful. Addy had two good nights sleep since coming home but last night was not the case. She fought going to sleep. Once she'd get to sleep and I'd put her in her room, it wasn't 5 minutes later and she would be screaming bloody murder. She has never done this before. We've always been able to read stories, turn on her music and she would go to sleep on her own. I really think having to hook her up to her O2 is messing her up. She cries and cries when I put it on her at night. I really don't think I'd be able to get it on her once she's asleep without waking her up but I'm willing to try at this point. I finally got her to sleep at 3am and she stayed asleep. I am beyond exhausted today. There was no way I couldn't go to work, I've missed too much and I'm so far behind. Can't justify the loss of pay either :( So I trudged along but not very well, my communication skills were less than desirable today. Thank goodness I was only conducting meetings and doing a little testing, not working with a child's communication skills today!

My friend, Deborah, and I are heading to Kansas City at 4am so I'm going to bed once Scott is home. I could seriously fall asleep right now!

Good Day :)

2012-01-26T18:14:00.000-08:00

Addy acts like she's feeling better today :) Lots of giggles and smiles :) She is back to walking everywhere again and isn't falling as much. She is just barely coughing today too! I really hope we can kick the O2 out the door sooner than the doctors think. She was not at all happy about it last night :( She cried and cried when I put it on her. She pulled her tender grips off today and told me she was "all done" lol. Fortunately she didn't rip her skin like she did when she was a baby! After her bath I put extra lotion on her though, hoping by the time I put them on tonight they will still stick! We have a substitute nurse tomorrow :( I REALLY hope it's not the one that came and I said I didn't want back! I couldn't remember her name now I'm kicking myself about it! I can't miss work, my Fridays are super busy with test write ups and I have 3 meetings tomorrow.

I wish I was off tomorrow, Jake's honor choir the Junior Jays are performing at the Missouri Music Educators Conference at Tan-Tar-A. They only ask 3 choirs from the entire state to perform! It's a huge honor! Cooper was also in the choir last year so he gets to go to support the choir :) I think he only wanted to go to hang out with his friend, Mason, and eat McDonald's but hopefully he will be supportive :)

I'm heading to Kansas City on Saturday for the Take Flight conference put on by the Down Syndrome Guild of Greater Kansas City. I love going to workshops, they are always so good! I also get to see some of my KC peeps which really does wonders for my soul! I had to miss Rochelle in October for Step Up, Alayna was in the hospital then :(

Post Hospital Visit

2012-01-25T18:05:00.001-08:00

I took Addy to her pediatrician after school today for a post-hospital visit. She told Addy that she wasn't supposed to get sick when she was out of town :) She didn't received the discharge summary from the hospital yet and wasn't too happy about it but we managed just fine. She checked Addy out and agreed that she has a ways to go before she is over the RSV and MPV. She didn't add any meds to her since these are viruses and she just needs to let them run their course. She did feel Addy has developed a yeast infection from all of the antibiotics she got last week. We are continuing O2 for at least a couple of more weeks since her lungs have really taken a beating. She is also consulting with Addy's pulmonologist to see if he wants to follow her again and decide when we should start trying to wean the O2. She stayed above 93 today on room air, yesterday she didn't. I'm going to hook her up to her pulse ox overnight in a couple of days. It's pretty doubtful she would need more than a liter at night since she was down to 1/4oth of a liter in the hospital.

Addy is really happy again tonight. She is practicing her signing by finger spelling her name with Rachel Coleman :) She LOVES singing the alphabet and watching her sign it is a stitch. Those little fingers really try to make all of the letters :) I'm so glad she is verbalizing again. She didn't in the hospital but I am so thankful that Addy has such a huge sign vocabulary since that is the only way she communicated with us last week :) I was actually so happy to hear Addy say "Jaaaaaake tooooooop!" (Jake stop!) She slept much better last night too. She is adjusting to a normal schedule again, it will probably take a week before she will go to bed on her own again. She got so used to mommy and daddy holding her all of the time!

Adjusting

2012-01-24T19:05:00.000-08:00

I am beyond thrilled that Addy is home but she did not adjust well last night. She screamed bloody murder every time I tried to put her in bed. I ended up dozing on the couch while she watched Sesame Street. Finally at 12:30 she asked to be picked up so we rocked for about the 10 millionth time and she fell asleep and stayed that way until after 9 this morning. I didn't put her pulse ox on I wasn't worried about her since she was on more oxygen here at home than she needed in the hospital and I didn't want to risk waking her up!

I just got her down tonight after the third try. I'm hoping that her days and nights get straightened out, I am exhausted. Scott is now fighting a terrible cold. I'm sure he caught it from Addy, he sounds and feels awful :(

Jarika came home for a little bit today, I missed her birthday so I'm so glad we got to see her! She opened her birthday presents and made Addy laugh like crazy, it was no nice to hear!

I'm off to bed now, hoping I drift off easily, I am sooo sleepy!

HOME

2012-01-23T16:25:00.000-08:00

After spending 8 days, 7 nights in the hospital my Addysen is HOME! Naturally I put her in the tub almost immediately once I got home from work :) She looks and smells so much better! Her cultures came back today and Addy did indeed have RSV on top of the MPV!!! No wonder she really wasn't getting any better! She went all day yesterday without oxygen but didn't make it through the night :( We were told that she'd have to be off O2 completely before coming home. Fortunately, her pulmonologist wanted her discharged as much as we did and sent her home! She will have to be on oxygen while she sleeps until she gets over all of this crud! I imagine it's still going to take her a couple of weeks. We will continue doing some CPT with the little thumper thing to help keep breaking up the pneumonia though. I am soo pleased to show you that now that her cannula is gone her mouth is closed! Thank goodness! That was making me crazy! She is going to be none to happy when the cannula goes back on at night but we'll have to make do! I'll put her tender grips (little stickers) on her face before she goes to sleep and Scott and I will tag team to get the cannula on her once she's asleep :) She's so sleep deprived I'll probably just try to put her to bed with it on, she really needs some sleep! She won't know what to do being able to sleep more than 30 minutes to an hour at a time! Hospitals are the worst place to try to sleep! She is sitting in her favorite chair watching all of the Play with Me Sesame she wants until we put her to bed :) She isn't walking anywhere yet but she is talking again :) How I've missed her sweet little voice! Thank you so much for all of the prayers for our little rockstar, we so appreciate it! Not too bad of a war wound! It helped that the IV went in the first time and she was numbed up!

Day 7

2012-01-22T15:32:00.000-08:00

Addy is doing so much better! I'm pretty amazed with her turnaround since yesterday. Especially after getting the news that her lungs weren't any better. I think the massager CPT has definitely helped! She got down to 1/40th of a liter of oxygen last night. They did have to turn her up at night when she was sleeping. She has been off of O2 all day today! No problems either! She even napped some and did ok! So... I'm very prayerful that she will make it all night tonight without O2 and we will get our discharge papers tomorrow! Her pulmonologist will check her out before he releases her and he usually makes rounds pretty early :) I went up and stayed a few hours after church today so Scott could have a little break because he is staying tonight and tomorrow. REALLY hoping that doesn't go into Tuesday! I cannot miss any more work, like I said, my paycheck is going to take a big hit and we really can't afford that :( Addy was in really good spirits so I seriously think tomorrow is the day!
Oh this tongue! It's going to be the death of me!

Day 6

2012-01-21T16:09:00.000-08:00

Addy and I had a rough night! I had just gotten her to sleep and in her crib and the PCA wanted to weigh her. I said no that I had just gotten her to sleep. So she said to let her know when she woke up. She was good and sound asleep and it was time to hook up her IV antibiotics :( Fortunately the nurse was awesome and was able to hook her up without waking her! However, it was also time for her Zantac and we managed to make her stir a bit :( Well, Ms. PCA heard she was "awake" and came in to weigh her. She barely stirred! Well, that was enough to have me undress her and wake her all the way up to get her weighed! I feel bad that I really wasn't very nice about it but that drives me crazy! Let a little one sleep so they can get better! It took a couple of hours to get her back to sleep after that and it only lasted 30 minutes :( her pulse ox came off of her toe and the night nurse came to check on her and felt to talk in his everyday voice so she was really up again. He then asked "so her Downs is severe?". I was too tired to spew out my speech about the subject so I just gave him a very adamant "NO"! Addy wanted nothing to do with going back to sleep so we I pulled her into my bed but she just could not get comfortable. So we tossed and turned for quite awhile before we both drifted off to sleep. We were woken up at 4 for vitals and CPT. I had to go to the bathroom so I put Addy in her crib and got a very sad little face :( Once I came out she was back to sleep though :) So we got to sleep until about 7 so not a horrible night but definitely not the best!

She had a good morning but she is drooling like crazy due to this whole tongue issue we have going on! I have been cleaning her mouth like crazy (pulling off the dried crustiness) so it is MUCH better today! I really think once that cannula is gone she will pull her tongue back in. When she's asleep it's right where it should be :)

My mom called and wanted to do something to help so I sent her on a mission to find some pajamas that were short sleeved (to go over her IV) with long pants since we are going through 4-5 shirts in one afternoon! She showed up with 5 new jammies for the darling girl. Grandmama's got style! A friend of mine from our Down syndrome group came for a visit too so it was a nice morning.

We were sent to Radiology for a repeat chest x-ray. It didn't show any improvement :( Her left lung has more pneumonia than the right so the doc ordered the vest things to rattle those lungs. About two this afternoon I turned off all of the lights to attempt to get Addy to nap. Our nurse wanted to try to lower her O2 levels once she was asleep to see how she would do. She finally fell asleep all over my left arm :) I told her to take a nap and she signed "no mommy sleep" lol. Stinker! The nurse came in to lower her O2 and saw that she was on a new regulator and was at 1/5 of a liter and we didn't know it (the RT had changed it)! She had been doing just fine too! So she pushed her down to 1/10 and was doing really well. A little later she went to 1/20 and that's where she is right now! Woo hoo! She had one "massager" treatment before I left. She didn't care for it too much! Scott just texted me to let me know that she has a new pulse ox probe and is satting 96-97!!! YEAH! If we can get this girl off of O2 we will get our walking papers! Hoping for tomorrow but planning for Monday :) Scott took the night shift tonight and will stay with her through Monday if needed, I have got to work Monday, so many things to do! Not to mention the fact that thanks to my tonsillectomy I have NO sick days so I am being docked for all days missed :( 3 days last week, not going to love my paycheck this month :( big OUCH!

Teenagerless!

2012-01-20T17:38:00.000-08:00

Today my beautiful daughter turned 20 years old! I hate that I wasn't able to see her this week to celebrate her birthday. The kids and I were going to head to Joplin to see her on Monday but a certain little princess got sick :( Thankfully Jarika completely understands and knows that I will be out to see her as soon as I can! I stole these pics from her Facebook, I LOVE this girl!

Still here

2012-01-20T17:08:00.000-08:00

Addy didn't have a great night or day today. They had to suction her nose a few times, she is really gunky. This morning when she was suctioned it got to be a big bloody mess :( They didn't even try to lower her O2 today, they had to go up to 1 liter through the night when she was so clogged up. She just wanted to be held all day today. Don't let the pic fool you, play time only lasted about 10 minutes this morning. The afternoon was awful, VERY cranky and lots of coughing. Fortunately the coughing is a good thing! The video is terrible but I couldn't see what I was doing lol! I have no idea when we will get out of here, I'm hoping for Sunday but I am very aware that it is most likely Monday or Tuesday :(

Inpatient Day 4

2012-01-19T17:59:00.000-08:00

Addy's "snot" test and her bloodwork came back today. The only thing I found out is that she has Metapneumovirus. It's going to take her awhile to get over it :( She didn't have a great night last night but today was a good day. I got some smiles and giggles. She even showed some of her spunky little attitude that I've been missing!

I was able to keep her awake except for 2 minutes so hopefully she will sleep for Daddy tonight. I gave her a much needed bath this morning, she smells so much better! The nurse tried to lower her oxygen to 1/4 liter and she kept dropping below 90 like crazy so she had to go back up to 1/2 liter. The doctor didn't think she was ready to try to wean again but she thought she would just lower it a little, obviously that didn't work! So she will continue to be inpatient until she is off of O2. I would LOVE for her to get off of it because I'm about to go crazy with the major tongue protrusion we have going on. She will NOT put her tongue in her mouth! We haven't had this issue in years so I'm really dreading breaking this once we get home. I'm really hoping that once the cannula is out she will feel back to normal and close her mouth. Her tongue is getting a serious beating. It is so dry that it is cracking and peeling. It's really gross I tell ya!

We are probably looking at Sunday at the earliest. Scott is taking the night shift again and I will head up in the morning. I'd love to be able to walk her around the halls but everyone else on the floor appears to have respiratory stuff too so I think we'll just stay nice and confined in our ugly green room :)

Day 3

2012-01-18T19:27:00.000-08:00

Scott stayed with Addy today. I called her pulmonologist this morning to let him know that she had pneumonia. She was discharged from pulmonology over the summer but he did want to know if she had pneumonia. I love his office (happens to be Addy's pediatrician's office too :). Anyway, they immediately transferred me to his nurse and she said that he was in the hospital making rounds and she would page him. I texted Scott to let him know that he may stop by. He was already there :) He ordered several tests to make sure we are treating Addy the right way. He ordered a complete winter viral panel, RSV, and wanted to check her immunity. They also took stool to make sure that she hadn't developed C-Diff from all of the antibiotics she's had. That's almost a given with her but I am praying that she doesn't develop it. Scott said they suctioned a lot of gunk out of her nose today and she was none to pleased about it! Sorry I missed that one! The nurse said that it was really thick too :( My poor baby! They did try to discontinue O2 but she went back into the 80s so that was a no go. Jake and I went up to visit tonight, he is really missing his baby sister! We cuddled for awhile while Daddy had a tiny break! Addy only slept 30 minutes last night :( I really hope they get more rest tonight! I will spend the day with her tomorrow. If she has to stay another night, which I'm pretty positive she will, Scott will spend the night again and I'll spend the day with her on Friday. I would love for her to get to come home tomorrow but I think that is doubtful :( Please continue to pray for precious girl.

Day 2 Inpatient

2012-01-17T18:26:00.000-08:00

Addy had a rough night a pretty good morning and very rough afternoon. From about noon on her heart rate was high and she was cranky and just wanted to be held in one position. For hours! My left arm is still numb and my right is beginning to get it's feeling back into it!

Whenever I moved her a tiny bit she would start crying and crying :( She will not close her mouth since getting her cannula and her mouth is soo soo dry. I tried several times to give her a drink and that was an absolute no go.
She also has her IV on her right arm and she is keeping her head tilted to the right and won't move it, I think she thinks she can't move. She won't move her right hand at all. (She's like that when we put a coat on her too :)

She spiked a fever and wasn't the same since :( I am now home with the boys and I'll go to work tomorrow, Scott is with her tonight and tomorrow. The doctor thought this morning that there was a chance she would go home tomorrow if she was able to get off of O2 today but when they tried to take it off she desated. Her cannula came off while she was sleeping and almost instantly went to 88 so things aren't looking very good for release tomorrow. Praying for Thursday. Please cover Addy in prayer, I so appreciate it!

Pneumonia

2012-01-16T18:55:00.000-08:00

I hate pneumonia! Addy has it in both lungs. It hit hard and fast! She started a tiny cough Friday night. Seemed fine Saturday morning with just a few episodes of coughing. When she woke up from her nap she had a temp of 102 which is really high for her. She seemed ok though! Yesterday she ran a temp around 100-101 and still just a little cough. This morning she had a temp of 99.6 and seemed very tired. Her pulse ox was 79, then 84 then 87. I gave her a breathing treatment and it went to 90. Still not good. So I took her to the doctor. Her ped is on a cruise but we saw the nurse practioner and I loved her! Addy really wasn't acting too bad, just puffy eyes and tired. She checked her out and said she didn't hear anything in her lungs but took her pulse ox and it was 89. They gave her another breathing treatment and it went to 91. They needed it to be above 93 to let me take her home :( The doc on call ordered a chest x-ray and had me take her home since it was almost lunchtime. So we got home and waited for the call. Sure enough Addy had pneumonia in both lungs but they felt it was viral, however, wanted to start antibiotics and more nebs. I was to monitor her all afternoon and let them know if she fell lower in her sats or acted worse. After her nap her pulse ox was 85 :( So that got us a one way ticket to admission. So here we are in the hospital :( Her x-ray from when we got here was worse than the one from the morning. So she is on IV Rocephin and continuing oral (lol g-tube) Zithromax and one other IV antibiotic. Her sats are now okay on 1 liter of oxygen. Her heart rate continues to climb at times so that's a little worrisome but not too bad. They took labs and I'll find out soon if they show anything. Prayers appreciated for my baby girl!

Fevers are frustrating!

2012-01-15T18:15:00.000-08:00

Addy woke up after her nap yesterday with a fever of 102 and it hasn't been under 99 since. She has a mild cough but no other symptoms. She's acting pretty good when her fever is below 100. I don't think she has an ear infection but I can never be sure with her. If she's spikes up again tomorrow it looks like we're heading to the pediatrician. Thankful that I actually ahve tomorrow off for the first time in about 15 years!

She's trying so hard to dress herself, she cracks me up!

Twenty-One Cakes!

2012-01-13T18:27:00.000-08:00

(Addy hanging out in the comfy chairs at Twenty-One Cakes)

If you've read my blog for awhile then you have seen the amazing cakes that my friend, Annie makes! Not only are they amazing to look at, they are beyond delicious! She is opening her new bakery this weekend, Twenty-One Cakes :) We got to go tonight for a special for friends and family! Scott and the boys had amazing chocolate cake and I had two mini cupcakes, one chocolate fudge and the other was oreo! Soo yummy! Too bad my crazy girl doesn't eat cake! She has no idea what she's missing! If you are local at all, tomorrow is Annie's grand opening in Nixa, you MUST go! 10% of her proceeds benefit the Down Syndrome Group of the Ozarks as well!

So Proud!

2012-01-09T20:26:00.001-08:00

It was grade card day! I'll give the run down if you can't read the pix :)

Communication Arts/Reading Readiness
The student can tell the name of the upper case and lower case letters in random order.
2nd Quarter:
Addy identified all upper case letters with the exception of Q and S (she does know S however!)
She identified the following lower case: b, e, i, j, o, r, s, t, v, w, x, and z.

The student can recite the entire alphabet correctly.
YES
The student can identify their name from other names that begin with different letters.
YES
The student can identify their name from 3 other names that begin with the same letter.
NO

Mathematics/Science Readiness
The student can count out loud without error.
Addy counts to 15 consistently

The student can count objects without an error.
She counted objects to 6. We can usually get her to 8 but on assessment day she went to six :)

The student can identify the following colors by naming.
Addy named green, blue, purple and brown. However, her teacher knows full well that Addy knows all of her colors ;)

The student can sort objects by colors. (goal 4 colors)
Addy is sorting 2 colors with 80% accuracy.

The student can identify the following shapes by matching.
Addy matches square, triangle, circle and rectangle.
The student can sort objects by multiple shapes.
NO
The student can position an object in front, above, behind, above and below.
NO, Addy will put an object "on" another

Motor Development
The student can hold a pencil correctly.
Sometimes, uses both hands (she truly prefers the left)
The student can color in the lines.
NO
The student uses scissors effectively.
EMERGING, she snips ;)

Social/Emotional Development
B=Beginning D=Developing M=Mastered
Respects Classroom and school rules: D
Participates in group activities: D
Shows self-confidence:D
Takes care of one's needs: B
Gets along with others: D
Copes with frustrations and failures: D
Knows first and last name :D knows her first name only

Work Habits
Listens attentively: D
Follows simple directions: D
Has good clean up habits: B
Stays on task: B

I am very pleased with Addy's progress! She is doing so well, what an amazing little girl she is :) She is blessed to have such a wonderful support system at school. Everyone loves and adores her and encourage her so much! All of her teachers are wonderful to help encourage things we want at home to carryover at school. We are hitting the potty training big time and she has done phenomenol! She didn't have any accidents at school today :) Hoping in a few weeks we will brave the no pull-ups!

Feeding

2012-01-07T18:49:00.000-08:00

If your child doesn't have feeding issues you are soo blessed! When we adopted Addy she had so many health issues that I really didn't worry too much about the fact that she had a feeding tube. I knew that someday she wouldn't have they oxygen, colostomies, pulmonary hypertension, and obstructive sleep apnea. The tube was another story. I knew that it would be a long time thing. I was seriously hoping that she wouldn't have a g-tube by the time she was four. That didn't happen and I knew then that hoping for age 5 was a dream. Addy started feeding therapy in November of 2010 and has made tremendous progress. I wanted Addy to accomplish three things before kindergarten. I wanted her to walk :) she's doing that! I wanted her potty trained, (see my 365 blog for that info) and I wanted her to not have to have a bolus feeding during school.

I'm not sure if that's going to happen but she is making so much progress. She is presented food with each tube feeding. She doesn't eat very much but at least now we are putting the spoon and food in our mouth without freaking out. She is tolerating Stage 3 foods pretty well too. She does freak out when a big chunk actually gets swallowed though. She doesn't mind it in her on her lips or in her mouth but does NOT like to swallow it!

Addy is really trying to be more independent. She really wants to feed herself but she just doesn't have the wrist rotation to use her spoon too well. I finally got in some curved spoons I ordered her. I had looked all over Springfield for them and couldn't find any so I went on and ordered them just after Thanksgiving and they just arrived this week! She is LOVING it! She does much better with her left hand so that's the only spoon I'm presenting her right now. The actual spoon is a little big for her but she is using it so I'm not complaining! She did great with lunch today, I can't wait to see what she's able to do just before school starts!

First Night

2012-01-02T20:19:00.001-08:00

Addy's first night in her "big girl" bed :) She never got up but she's not quite in her bed!

Doing pretty well!

2012-01-01T20:10:00.000-08:00

Well, I wanted to get things more organized around here and I've definitely been putting forth the effort! Last night I almost got Addy's playroom finished! I'm posting what I have complete, just have a few more things for the walls and storage stuff. It's looking really good! Naturally her favorite thing is the new Princess TV and DVD player! That girl is such a Sesame Street, Signing Time and Tangled addict! However, my plan is working and I've been setting out some toys on the floor by her that she is actually playing with while she watches! She LOVES her tub of different type of letters (foam, block, magnets etc. ) and they seem to end up all over the floor, but it's progress!

I had big plans to tackle my closet today. It was a complete disaster, Scott and I could barely walk in it! I had boxes to go through and tons of clothes. I seem to put things in the closet that need to be organized but I just don't have the oomph to do so! I knew it was going to be a major undertaking but it really had to be done! I have 6 bags of clothes, purses, and shoes to donate to the thrift store. I have some of my nicer things set aside for good friends to go through. Losing weight is at least good for cleaning out my closet! I have a few things that I got from another friend that I am REALLY hoping will fit by spring and all of the spring stuff I have from last year can be passed on as well! I need to do another before and after pic but I'm waiting until I hit the 100 pound mark and that's still a little ways away so you'll have to wait! I am exhausted, it took about 6 hours to go through everything , pack things up, put things in different piles, shred stuff etc.! I wanted to be finished by early afternoon but I didn't get to start until then. I got a call about 9 this morning from a crying Jarika :( poor girl fell last night and sprained her ankle AGAIN! So I met her in Springfield and we went to Urgent Care but it was closed today so we had to go to the ER, it took forever! Fortunately, the ankle wasn't broken but she is back in a gel cast and on crutches until she can go see her surgeon next week. She's had reconstruction surgery on this ankle twice already! We are hoping that this isn't surgical and just needs to heal. She probably needs physical therapy again. Good thing she works in a training room with Athletic Trainers huh!!?!
Well Happy New Year!

2012

2011-12-31T15:27:00.001-08:00

I am not really one of those people that has a list of changes for the new year or regrets of the old. There are definitely things that I wanted to happen in 2011 that didn't. Maybe they'll happen in 2012 but I don't know! I do have a few things I want to change. I definitely want to get more organized, my house is a disaster! I cannot keep closets, counters or our garage straightened up, it makes me quite crazy! So I am hoping I'm able to at least change that!

We took the kids to see Chipwrecked this afternoon. It was Addy's first movie :) I only had my Iphone so I didn't get a great pic of her there, the lights were already out when we got in to sit down. She absolutely loved the movie though :) I was worried that it would be too loud for her but it didn't phase her a bit! She laughed and danced and sang, definitely had a good time :)
I hope everyone has a safe and Happy New Year! Looking forward to the post a pic everyday challenge thing that I signed up for :) Should be interesting to see if I actually do it!

Christmas Pix

2011-12-26T16:00:00.000-08:00

I hope everyone had a wonderful Christmas! My kids are happy with what they got :) We don't use credit cards so fortunately we don't go into debt at Christmas! They have plenty and so do we :) Enjoy time with your families!

Addy always gets some one on one music attention from her cousins' grandmother :) She's a retired music teacher and she and Addy sing and sing!
Someone was completely wiped out! Crashed out watching Rapunzel right on the kitchen floor :)

Merry Christmas Eve!

2011-12-24T10:18:00.001-08:00

Sometimes you just have to write

2011-12-24T04:24:00.000-08:00

I have written this blog post in my head for a couple of weeks now. This has the potential to upset some people but I finally decided that this is my blog and I have a right to write whatever I want to in it. Not that many people read it so here goes.

Many of you that know me well know that I am very passionate about adoption. If it weren't for adoption I wouldn't be where I am today. I don't know how different my life would have been if my birth mother had kept me, but I know how good my life was with my adoptive family. I can't imagine it any other way. I can't even think of my family without Addy in it. We were meant to be her parents, no one could love and adore her more than we do. Seriously, it's quite sickening really, we are absolutely crazy about every little aspect of her. I adore my biological children, don't get me wrong, they are my world! However, Addy is extra special and everyone knows it. I don't love her more than my other children of course, but I will admit, she gets away with more, she definitely gets more attention!

I found out a couple of weeks ago that Addy's birth parents were going out of the country to adopt a baby. I found out on a status update on Facebook. We have an open adoption so there is contact between us. When I found this out my heart kind of sank. My thoughts immediately went to Addy. What am I going to tell her? Is she going to understand this? I hope to God she doesn't. She is very smart. I know we all say that about our kids but she truly is. I've worked with several children with Down syndrome and let me tell you, sister's got game! Last night I saw a picture of the baby they are adopting. Absolutely darling, but once again, my heart sank. I don't ever want to explain this to her. Jake even said to me that he's happy for her birth family but sad for Addy. He doesn't want her feelings to get hurt. That's my boy, so sweet and concerned for his baby sister. I'm wondering why I wasn't told about this? Is it any of my business? No, it's not, but then I think it kind of is. My heart hurts for my girl, once again, I hope to God she never understands that she was given up because she has special needs. We are all fearfully and wonderfully made. The Bible tells me so :) Psalm 139 I will praise thee; for I am fearfully and wonderfully made: marvelous are thy works; and that my soul knoweth right well.

I got pretty upset last night. People have no idea what I am feeling about this. I was accused of being jealous. That I am not. How could I be jealous of their new addition when we have Addy??? I may be jealous of the adoption, I'm jealous of ALL adoptions right now because I want to adopt again so badly! I get so frustrated when people look at me and say that I already have my hands full. How do you know? Do you live my life? Do you do what I do everyday? No you don't. I am fully capable of taking care of my children, my home, my husband, my job and everything else without getting overwhelmed. Are there days when I wonder how we are going to be able to do it all? Absolutely, but families with one child have that issue sometimes! I look at Reece's Rainbow and fall more in love with those little faces every day and wonder when is it going to be our turn? So many people have said that they didn't the money for an adoption when they started their process. We definitely don't. However, I must not have enough faith because I know if we started the process we would not have donations flying in like I see so much of. We also don't have family that is willing or able to take care of our other children while we travel out of the country for who knows how long. I don't live in a community where we could host a fundraiser and thousands of dollars would come in. We'd be lucky to see a couple of hundred and when you're looking at $25,000 to $40,000 it would take years to get it all raised. Scott and I both work full time so neither one of us would have the time to devote to fundraisers either. So here we are, waiting until someday when we are able to save up enough to make a dent on this endeavor. People don't listen to me when I tell them that donations to Reece's Rainbow are tax deductible, I'm not asking for money to be given to me. Sometimes I just get so bummed about it that I just have to stop thinking about adopting again and move on. I am more than happy with my family the way it is, however, I can't stop thinking about what a blessing it would be for Addy to have a sister with DS so they could always be close and have each other. Am I closing the door to this dream? Absolutely not, however, I am going to start buying lottery tickets!

Music Performance and new skill

2011-12-23T06:18:00.000-08:00

Last Sunday Addy's music therapy group had a Christmas performance and Addy had a solo :) She has a tendency to throw her instruments (shocking I know!). They did a really good job, it was quite adorable! Addy has received an award for having the Best Smile and Best Diva! That's my spunky little girl! LOVE HER!

She also has a new skill. She LOVES to stim with rubbing things on her hands and she's figured out that if she removes one sleeve she has better access to her shirt so she can rub it on her hand lol. She's a mess!

I'm sure many of you are also fans of Pinterest, I sure am! I've been wanting to do more things with Addy's hair and found these cute little Lattice braids. I'm going to practice some more things over break while I actually have more time to fix her hair in the morning!

Burning Down the House!

2011-12-12T18:03:00.000-08:00

Addy's music teacher, Mr. Berns absolutely is amazing! Addy adores him! However, I think every child in our school adores him! He is fantastic with the kids! Every December he puts on a "Burning Down the House with Mr. Berns" music and movement time with our Parents as Teachers and Preschool kiddos. Addy loved it last year and tonight was no different!

She's in her ballet stuff since we had just come from class (which she actually stood and "danced" in because we had her wear her ballet slippers to school and did fantastic in them!)

Boogeying down!

This is Addy with her friend, Kevin. It was so cute, he called her over to sit by him :) That's his family behind them, his baby sister, Brooklynn and I are buddies!

She even held two rhythm sticks and didn't throw them once! She also had an egg shaker and never did it leave her hand until it was time to put them up! This girl is a stinker!

Crazy Busy Weekend!

2011-12-11T16:50:00.000-08:00

This weekend pretty much had NOOO down time! Yesterday Jake had pageant practice starting at 10 and then had a birthday party to go to. Jarika was coming into town to go to the funeral for two friends that were killed in a car accident last week and Addy and I had a birthday party to go to as well. It was busy! Here's Addy making a craft at the party :) I was going to get pix of her with the birthday boy but he wanted nothing to do with it!

Today was even busier by far! This morning Cooper's youth choir at church was singing along with our Praise Team for a special Christmas program. They did a great job, they always do! I didn't get pix of it since it was really crowded this morning, but here's a pic of him today :)

This afternoon Addy had her first dance recital. She's only been to dance class 3 or 4 times (I think) and she is making progress with participation, but the shoes are such an ordeal for her! She pretty much pulls the noodle legs when she wears her ballet slippers or tap shoes (Her OT thinks I need to send them to school and make her wear them there :) She won't stand in the tap shoes at all but she will for a little bit in her slippers when it's her idea and she feels like it :) So here is Addy at her first performance :) Yes, she sat the entire time and only moved her arms at the appropriate times maybe twice, lol. I had to wake her from a nap so she definitely was not on her game but at least she was there!

Then early this evening Jake had his Christmas pageant at church. He was Moses in the beginning having a snowball fight with an angel. Didn't make sense to me either but oh well!
For the rest of the performance he was Joseph. I didn't get a pic of him afterward with his "hat" on but I thought he made an excellent Joseph! The kids all did a great job, it was quite a cute performance! The most entertaining part was my friend's son, Kannon, he did a mean "PA RUM PA PUM PUM!" I know someone will have it on video, I'll share it on Facebook, it's worth watching!

Addy was pretty thrilled to see that Santa made a surprise visit too! She's the only one of all of my kids that hasn't done the whole Santa freak out!

Christmas List

2011-12-09T15:40:00.000-08:00

I remember making a Christmas list when I was little. My kids have made lists every year too. I couldn't tell you the last time I made a one though! I'm going to show you my list this year, I made one :) I know pretty much everything on my list is impossible but it's been pretty fun dreaming!

I REALLY would LOVE hardwood floors in my family room and hallway upstairs. I despise carpet!I also want to frame several of my pictures of my kiddos that I have stored away. I have some areas that need more pix on them :) Not sure if my stairway would look this neat, but I love this one!

A gift card to Target would please me as well :) I could spend $1000s there!
Since Scott wrecked my van in Arizona I had to get a new (to me anyway!) one. I am actually thrilled with it so it was truly a win win :) I do miss my remote start though now that it's freezing outside!

I also want to finish my playroom project for Addy that I've been planning and doing bits and pieces of it in my mind. I would LOVE to have lots of baskets and shelves to store all of her things :)

I also want to get our garage much more organized, it's a disaster! For some reason Scott and I can NEVER keep our garage clean!
Most of all I want to adopt through Reece's Rainbow. I desperately want to give Addy a sister with Down syndrome :) I truly feel that someday it will happen, just waiting on the time when we have the financial means to do so. I would take any of these little sweethearts! I would take ANY child with DS actually, but I couldn't post all of their pix! Don't forget about Reece's Rainbow's biggest fundraiser of the year! The Angel Tree can be viewed by clicking here. Donate to anybody's grant fund, they all need families!

Will Blog Later

2011-12-07T20:26:00.000-08:00

Feeling down and ucky today (it's my word, just go with it). Addy is feeling much better now that we got all of the poison aka. broken down milk proteins out of her system. Been very busy this week and it's going to remain that way. Will have to do a big post later of all of our activities!

I love this picture, just wish I would have known my baby girl then! I was definitely praying for her all of the time, I didn't even know she was born!

I told him so

2011-12-04T09:05:00.000-08:00

Someone is excited about trying her new formula! Addy loves to shake things so she was more than excited to help prepare her meal this morning. Poor girl didn't know what she was getting into!

Did I not tell the GI last week that Addy is allergic to milk I DON'T CARE WHAT THE BLOOD TEST SAYS!!! I gave her her first feeding of Peptamen Jr. this morning. Thank God I trusted my gut and left her home from church with Scott (just in case). At 10 o'clock she vomited. Then again around 10:30 when I got home. She's had two blow out diapers, and looks like this after her bath since we were covered stem to stern in you know what! Mommy wins, doctors need to listen to me!

DSGO Christmas Party

2011-12-03T14:06:00.000-08:00

We had our annual Down Syndrome Group of the Ozarks Christmas Party today. Addy's music therapy group also performed a song with their chimes. Addy didn't want to stand up (shocker) and she constantly throws her chimes so she has to have an adult helper :) I forgot my big flash so the pix aren't' great but you get the idea :) There's no picture of her actually playing her chime either, ugh. At least they have their bigger performance on the 18th, maybe we'll do a better job! I do have it on video and I'll upload it to Facebook later :)

We had a great time and the kids loved their gifts from Santa! Cooper got a $5 gift card to Andy's Frozen Custard, Jake got a nerf torpedo thing and Addy got the game "Don't Spill the Beans" :)

The boys showing off their "Moves like Jagger" :)

Addy and Daddy (I was hoping No Shave November would turn into Do Shave December)

Addy doing the "Macarena"

Tin is In

2011-12-01T20:07:00.000-08:00

Yesterday Cooper got his braces on after three weeks of having spacers. Cooper has major issues with his mouth. He is EXTREMELY orally deffensive and has a very limited diet. He does not eat anything soft or mushy except ice cream. He would live on pizza, cereal (without milk on it of course!), and pretty much any kind of meat. He had a horrible time last night, he was having a very hard time eating and talking. He wasn't in pain, just having a hard time adjusting to the palate expander that he has to have. He has a small mouth and his orthodontist is trying to make it so he doesn't have to lose any permanent teeth during all of this orthodontic work. He will get his wire put on in 3-4 weeks, we have to adjust his expander every night for two weeks. I'm really hoping that things get better quickly. I hate seeing him upset because he just can't help it :( He will have the braces on a minimum of 2 and 1/2 years so this is going to be a long ordeal!

GI Appointment

2011-11-29T18:49:00.000-08:00

Yesterday Jake and Addy and I headed up to St. Louis for Addy to see her GI specialist again. When we went for her 5 year check up her ped wanted to get her into GI before our scheduled appointment in February so she called and got us in super quick! St. Louis is about 3 and 1/2 hours from here so I took Jake with me so I'd have someone to talk to on the way home since it would be dark and I'd be tired!

When we first saw the doc I was getting pretty frustrated. She is the doc we saw last spring and I adored her. She was very different yesterday, however, she is very pregnant so I'm blaming the change on that. She came in and just asked what was going on and then replied "So pretty much what was going on in the spring?" She went on to talk about how we did the barium enema and it didn't show too much and there's really nothing wrong. Addy's bloated belly is behavioral!!! I'm pretty sure the look on my face was not pretty because she then decided to come and examine Addy to see if she noted changes from the spring. She said that her entire abdomen is full of air (no kidding) and all of the gas and belching has to come out somewhere. I asked her about trying a blenderized diet with Addy and she said that she wasn't familiar with it and had never heard of trying to put those types of food through a g-tube. She thinks it will ruin the tube. I know my face spoke volumes, I really couldn't believe what I was hearing. BEHAVIORAL and NEVER heard of a blenderized diet????? The behavior that she is referring to is this: You just need to see the first little bit to see what she's doing, the rest is just a poor demonstration of her knowledge lol

http://www.youtube.com/watch?v=fWjZZRYVvWg

Addy sucks on her tongue when she is tired and at other times too I guess. I don't notice it too much during the day but it is quite often at night. She swallows air while doing this and appears to be causing the distended belly. However, in my opinion I don't think it has anything to do with the inconsistent bowel issues. Fortunately she must have decided that I wasn't happy and told me she wanted to go and consult with the other GI to see if there was anything else we should look into.

After about 30 minutes she returned with another doctor. I can't remember his name, I'm going to have to look it up because I was pleased with him! He started off with going over Addy's basic history and making sure the info he had was correct. He checked Addy out and agreed that the air in her belly is pretty much everywhere. He also saw the tongue sucking thing and said it could be causing some of the issues but we have some options to look into. Praise the Lord! He is proposing three things to do. We won't necessarily have to do them all but they are possibilities. His main question was why was I so pleased with Addy's formula. She takes Elecare which I usually refer to as liquid gold. Long story short, after finding out Addy was starving and could not handle a milk based formula this was the only other option left and she did fantastic on it and was finally growing and thriving! He said that Elecare is really only for people with short gut syndrome or severe food allergies. I knew this but felt all of her reactions to milk products was how we got to the Elecare anyway. He said that he doesn't think that Addy has short gut or food allergies. She has had a blood test for food allergies and it did show that she wasn't allergic to any foods, including milk. So he wants to try to change her formula first. He wanted to just put her on Pediasure. I'm pretty sure I freaked a little bit, her history with milk products is not pretty. So he decided to start her on Peptamen Junior. That's been an ordeal trying to get that today so I'll have to finish that quest tomorrow hopefully. If the change in formula after 7 days changes nothing he is going to put her on an antibiotic which does not absorb into her gut but will kill all bacteria that could be in there. I can't remember the name of it but it's not Flagyl because she has been on it several times. If the antibiotic does nothing he will then attempt a test where Addy "drinks" a sugary substance and they will measure her breath for sugar, oxygen, carbon dioxide and other things. He's not sure she's a great candidate for the test because of her oral aversion and the fact she has DS, otherwise known as stubborn :) So all in all I'm happy that we at least have a plan of action here. Now just hoping we are able to get the formula soon so we can give it a try. We are going to try it on a weekend just in case she does get really sick on it, I don't want to be away from her. When she does have a reaction it's not a pretty thing :( really praying she doesn't react!

So after our 2 hour appointment we start to head home in the rain and then the sleet! It was a long trip home but fortunately we made it home safely :)

Decorations are Done!

2011-11-27T10:27:00.000-08:00

We put up the tree after church today. It was kinda sad without Jarika! But I smile thinking that she is putting up her own tree in her own place :) I'll have to take her to the half price sales after Christmas so we can have stocked up better for next year!

Addy thoroughly enjoyed swinging the ornaments around!

People that know me know that I DESPISE pix of myself. I have lost 86 pounds (I gained 3 while on break!) since my surgery in July of 2010 which is great but I'm at that stage where I am not seeing it. I just see YUCK when I look at pix. I feel a little better when I see the before pix but I don't see much difference. I should. I've gone down 5 sizes in pants but only one in tops. So irritating! I want to post when I hit that 100 pound mark but it will probably be after the new year. However, Scott got a couple of pix that don't make me vomit too much!

Scott was rubbing my feet (I'm such a lucky girl!) and Addy put her foot up for Daddy to rub too! It was beyond cute I tell ya!

Happy Thanksgiving!

2011-11-24T17:41:00.000-08:00

What a wonderful day we had today! We went to my sister-in-law's parent's house and had a huge meal with a lot of family! My nephews moved back to St. Louis a few months ago and it felt like I hadn't seen them in ages! Only my oldest nephew, John, was here and Addy was so happy to see him! He is her FAVORITE!

(Addy kept saying cheese but wouldn't look at me so none of us could quit laughing!)

Jarika and John :)

The weather was perfect! The kids played and played and played outside when we weren't eating! They will all sleep very well tonight!

All twelve kiddos!

I hope everyone had a very blessed day and enjoyed their family as much as we did!

So far behind!!!

2011-11-20T09:40:00.000-08:00

Addy after church this morning, she was too cute not to share!

I have been such a blog slacker this fall. It's not like I don't have good reason though! The first two weeks of October were filled with pneumonia and then I had my tonsils out on the 1st of November. I hate that I haven't been posting what I'm thankful for each day in November and I completely missed 31 for 21 in October :( Since I am healing very well, my doctor called me a Rockstar Patient I think I may finally be back in the world of my blog! Not a whole lot of blogworthy things have happened since I've been down and out but I do have a little bit to share.

Addy started ballet and tap class on Halloween :) I only have pix of her first day. It was really nice that day because she was the only student there! We got to know Mrs. Jennifer a little bit which was great for Addy. Mrs. Jennifer is amazing! She has worked with children with special needs and is really sweet. She's going to be a great person for Addy! There are about 5 girls in her class, all of whom are five years old like Addy :) Addy seems to really like the class so far (she's only been twice, she had to miss once during my recovery). The problem we have is a sensory one of course. Addy is not a huge fan of things on her feet, therefore ballet slippers and tap shoes put her intermediately into a drop and stop mode. When she was one-on-one she did get her to get up and walk a bit with her slippers on. Tap shoes, not so much. Last week she would not stand up at all the entire time! We were hoping her seeing the other girls up and moving would encourage her but not so much. We are just going to give it time and see how she does! She is not in dance class to become an amazing dancer (which I know she could be :), but she is there for socialization, motor skills and language development. All of which is so important for her. I'm so thankful that she is given the opportunity for this, I know she's going to love it!

On Wednesday we took Addy for her 5 year check up. I cannot believe this tiny little girl is FIVE!!! She weighed a whopping 27lbs 4 ounces and is 36 inches tall :) She isn't on the typical growth chart and I forgot to look at a DS chart, she may be on it now! She was able to do all of the developmental things they asked with the exception of fine and gross motor things such as writing shapes, jumping, drawing a person, drawing a letter, hopping etc. She knows her colors, shapes, letters, numbers, counts to above 20 and one to one beyond 12 most days, follows directions etc. She's totally on target for preschool academic skills, she's above many of her peers :) We are still working on playing appropriately with things, playing with others, and HOLDING THINGS IN HER HANDS! She does not like to hold things very much at all. Music therapy is pretty much trying to get Addy to hold her instrument for at least 5 seconds before chucking it. She doesn't use both hands at the same time either. We have to stop her from telling the other kids it's their note to play (she does love her letters!)! If she has something in one hand and you give her something else, she drops what was in the first hand, very frustrating indeed! We are working on all of these things and the playing is improving. In the mornings before school I give her a choice of just three activities that she will be playing with in the afternoon after school. For the last few days she has chosen her grocery cart and play food and she is playing with them! Very pleased to see that! There is hope!

She's blowing kisses :) Have a blessed day everyone!

Lilly

2011-11-03T10:55:00.000-07:00

I love this precious little girl. I am her Christmas Warrior this year. I am hoping and praying that I can have enough donations in her grant fund that someone steps up quickly to adopt her! She needs surgery. Here is a little bit about her:

This little one has been waiting SO long. This gorgeous little blondie has a significant heart defect and needs to see a cardiologist. She is doing ok for now, but definitely needs a family quickly! She also appears to have strabismus. She has the most beautiful eyes!

Update Fall 2011- She is not mobile, does not speak, but she takes food from the grated bottle (bottle with top of nipple cut off, so thicker liquids go through), and can understand some things. Despite her conditions she can still smile, but doesn't know how to play with toys and throws them.

This description just screams I NEED A FAMILY! Please click on the right side of my blog to make a tax deductible donation to her adoption grant fund. If you donate $35 you will receive a beautiful Christmas ornament with Lilly's picture on it. I have donated to several orphans for the past few years and I LOVE my ornaments, especially since they all have come home to families since being on the Angel Tree! That is my hope and prayer for Lilly, she deserves a loving family to help her become a happy, healthy little angel that she is!

Halloween Pix

2011-11-01T14:41:00.001-07:00

Short post. Pix of Halloween Cooper was SAM from the book "Gone" (actually I think he's just Cooper wearing jeans which RARELY happens, Jake is a Raiders fan and Addy is Rachel of course!) I had my tonsils out today and I'm doing well, just resting!

Step Up for Down Syndrome Kansas City Style!

2011-10-29T15:26:00.000-07:00

Addy and I went to Kansas City last night so we could participate in the KC Step Up today. We had an easy trip up there. Our new van has a TV in it that Addy didn't know about. Thank goodness her preschool teacher had some Sesame Street VHS tapes! (We will be changing it to a DVD player soon :) She loved having that to entertain her but got tired of them after about an hour so we put on Dr. Jean and sang away!

We got to our hotel kinda late so I got Addy into her jammies and fed her real quick. I must have fed her too quickly because she almost immediately decided to upchuck most of it :( I was afraid she was coming down with something, she's had funny stools and has been acting like she was going to vomit on Thursday so I was freaking out inside! Fortunately she was fine all night with no issues at all! I fed her breakfast nice and slow and she did fine!

We got over to Step Up and they had so many cool things for the kids to do! Jake would have LOVED it! They had a rockwall and a bungee jump thingy (nice vocabulary huh?), and both boys would have enjoyed the Video Game bus! Addy like Radio Disney and was dancing around a bit! We had so much fun hanging out with Pudge and Biggie (LC and Jace in case you didn't know!) and Dariya. Poor little Alayna has been in the hospital with a nasty respiratory virus. Fortunately she got out today! We missed her and her mommy Rochelle so much! However, hanging out with their Daddy, Jason isn't a bad deal, what a gem he is! Addy and I are both pretty fond of that wonderful British accent as well :) Addy was amazed that she was bigger than other kids! She definitely needs a little brother or sister! Who's in for a major fundraiser???

Here are some pix of all of the cuteness, can't wait to see more! I know Courtney got lots of good pix, Addy was being a ham for her!

Hi LC! Long time no see!!

I seriously would get NOTHING done if I lived in a house with these two!! They are so stinkin cute! So busy too! Addy is a cakewalk!

She was fascinated with the clowns, she loved them! Here's what she was pointing at:

Addy and Courtney :)

Addy and Jace :) They weren't sure what to think of one another!

LC and Addy hugged and hugged! LC kept telling Addy some amazing stories too, so funny!

Addy and Dariya! She was blowing kisses :)

See her stories were hilarious!

Addy decided that Jace and LC were having too much fun walking around so she decided to take a stroll! LC was hot on her heels :)

And she bypasses the big girl!

Time to go home, so sleepy!

21 Things about Addy :)

2011-10-21T04:26:00.000-07:00

1. SHE IS WALKING!!! (that's a big one!)
2. She absolutely LOVES music.
3. She is "eating" about a jar of baby food per day.
4. She sings a mean Prairie Dawn.
5. She's BOSSY, just ask her and you'll hear "I bossy".
6. She's stubborn.
7. She is still one of the gassiest kids I've ever met!
8. She is so smart! She knows all of her colors, rote counts to beyond 20 and has improved her 1-1 correspondence to at least 12, knows her uppercase alphabet letters, follows two step directions, and follows classroom rules when she chooses too :)
9. Randomly breaks out in singing the ABCs.
10. LOVES to hold your hand by your thumb and rub your palm across hers. She'll do it for hours if we'd let her :)
11. Weighs 27 pounds and is 35 inches tall.
12. Just turned FIVE YEARS OLD!
13. Doesn't want to have anything to do with fine motor activities.
14. Is completely addicted to Sesame Street and Signing Time.
15. Loves to go in the car and is an excellent traveler!
16. Thoroughly enjoys reading books.
17. Learned how to drink out of a straw!
18. Still thinks Jake hung the moon! However her favorite phrase is "Jaaaaake stooooop!"
19. Calls our dog, Bella, Beya Beya Beya.
20. Loves school and being with friends.
21. Is LOVED so much by so many people. She is the most special little thing, each and every chromosome makes her such a unique, beautiful little girl and we couldn't be more blessed to be her family!

Birthday Bash!

2011-10-16T17:06:00.000-07:00

We had Addy's birthday this afternoon and had a blast! Several of her friends from school came to celebrate with her, so very sweet! Addy got so many wonderful gifts, she's a lucky little girl! I'll get pics of her with her loot tomorrow, our birthday party girl turned into one big cranky girl on the way home! Way too tired!

We went to Build A Bear and each child got to make one of their choice. They had a special on the cutest little owl and that's the one Addy chose, it is darling!

Playing Simon Says with our bears :)

Even Jarika came to visit!!! Addy's blowing her a kiss lol

Addy really only enjoyed playing with the ribbons! She didn't take part of any of the other activities!

Aren't group pix hysterical!

Addy managed to grab the cake before we could get pix, lol. Too bad she wouldn't eat it! It was amazing! Strawberry cake with banana cream filling with chocolate icing, oh my word! Beyond delicious! If you're local, visit here and 10% of the proceeds go to the Down Syndrome Group of the Ozarks!

Addy loves opening presents. She can throw all the paper and someone else picks it up!

Addy was signing "Happy Birthday" while we sang :)

I'm working on Addy's video montage which I'll post on Addy's actual birthday on Tuesday :)
Yesterday Jarika worked the Missouri Southern State University's football game :) Isn't she a cute little student trainer! :)

Fire Trucks and Music Therapy

2011-10-13T18:36:00.000-07:00

The firefighters came for a visit today :) Addy's class were so well behaved while they spoke! Not one of them was afraid of Sparky the Fire Dog either! Pretty impressive huh?!?!

Addy even tried a little bit of the snack today, fire trucks :)

Tonight Addy got to participate in her first Music Therapy session! She had so much fun! There were about six kids in the group. They got to play with shakers, chimes and drums tonight. Addy had a difficult time staying in her space (shocker) and actually hanging onto her chime. She didn't want to hold it and kept throwing it. We're going to have to work on that! Can't wait till next week, she just lit right up and had a blast!

I Love Down Syndrome!

2011-10-12T15:45:00.000-07:00

It is really quite sickening how crazy I am about people with DS! Well before Addy ever entered our lives I was drawn to people with DS. I was always so excited when we got a referral for a new student that had DS. My boss would joke that they needed to be hidden from me because I would snatch them!

Since it is DOWN SYNDROME AWARENESS MONTH, I'm just going to talk about what I love about Down syndrome. First off, the physical characteristics. Those beautiful almond shaped eyes, the crooked little pinkies, the gap between the toes, their short stature, and their amazing smiles! I am always impressed with their low muscle tone and flexibility, watching Addy in her "taco" position cracks me up!

I love their souls, I know there's the ole wives tale that children with DS are always happy, those of us that live it know that that is not true. However, they are honest to goodness, good, honest, loving, and giving little beings! I don't think I really have ever witness people I know with DS that have people they don't like. I'm sure that happens often, I've just never seen it!

We are so blessed that our dream of Addy came true. There were days that I had almost given up on our dream, so glad I didn't have to! May 17, 2007 will forever be a memory for me, that's the day Robin Steele called to let me know that a 6 month old baby girl from up north was available for adoption. That was my girl!

My precious little one is turning 5 in 6 days!!! I'm working on a montage of her first five years and all her amazing little gifts she brings us everyday! We're having a party at Build a Bear for her, should be a lot of fun, I wish all of our bloggy friends could join us :( Sometimes I think we should do fundraisers for all of us to have annual meetings!

Never seen

2011-10-09T18:31:00.000-07:00

I had never seen this precious picture of my baby girl until today. What a precious beauty she was just a few days old :) I cannot thank her birth parents enough for sharing some wonderful pix with us. I will be putting some into a montage for Addy's 5th birthday coming extremely soon!

Fall Friday Nights

2011-10-08T15:04:00.000-07:00

We enjoy going to our school's football game on Friday nights :) Addy works the crowd and claps with the cheerleaders and the band. She always says "touchdown" with her little hands waving in the air. It's so much fun.

Last night I took some pix of another favorite girl of ours :)

I can't wait to see Addy out there playing with the band, dancing, tossing flags or whatever she chooses to do :)

No wonder

2011-10-06T15:02:00.000-07:00

No wonder I feel so horrible. I was up at 3am hacking my lungs up with a bunch of lovely "gunk". I decided enough was enough and called MY doctor and was able to get in to see him today. Thank goodness I did, I have pneumonia. Hoping the massive amount of antibiotics and stronger cough medicine will help. I am still completely wiped out. Fortunately this weekend isn't too busy and I can rest again.

Addy's so stinkin smart. How I love this girl!

(temperature anyone?)

I can't decide what color Addy's eyes are. They aren't really brown or green. I guess they are hazel? What do you think?

Fail

2011-10-05T18:33:00.000-07:00

I have totally failed at this year's 31 for 21. Being sick for a straight week has kicked my butt. I am hoping that I will be much better by the weekend and I can do more for Down syndrome awareness! For now here is Addy's school pic. Had to take a pic of the pic (no scanner and it's illegal)! They are pretty darn cute if I do say so myself :)

I tried to get a good pic of Addy's cute new glasses (she had her old ones on in her school pic) but she was being a little uncooperative, she's got a case of my gunk and isn't feeling very well. She isn't leaving these frames on any better than her other ones. She doesn't touch them at school but the second we are in the car they are off and she only wears them for short periods of time at home before she chucks them across the room :( it's so frustrating!

We had her IEP this morning, it went really well. She attends a reversed mainstream Pre-K class from 8:30-11:30 Monday through Thursday. She is pulled out one hour per week for physical therapy. She gets an hour of OT per week as well as two and a half hours of speech therapy weekly, outside of class. She attends music (her absolute FAVORITE), PE, library, art and computer lab each week as well. Addy mastered all of her IEP goals from last year with the exception of interaction with peers. She is finally doing that but not at the level we would like for her to:) Almost every goal has a hint of a compliance to it :) Addy performs on her terms. Makes us crazy! She hasn't identified colors for her teacher in class, however, Friday night at the football game she did. All of them :) She has trouble with shapes but she did identify three of them during speech :) She recites the entire alphabet (with the exception of Q), identifies the majority of the Uppercase letters and a handful of lowercase, rote counts to at least 20 (we can't understand her after 20) and counts one-to-one correspondence to about 6 but that's just when she absolutely feels like it. Academically she actually above average, which is awesome! If we could just get her steadier on her feet, potty trained and interacting with her peers more I think it will be a very successful year! It's all on her terms. We've got to find the trick to breaking this, she knows so much more than she lets people know. Fortunately, the entire staff sees that and knows how smart and capable she is!

Day 2

2011-10-02T16:15:00.001-07:00

Well I still feel horrible so once again you just get a pic of my chromosomally enhanced princess :)

Down Syndrome Awareness Month!

2011-10-01T09:35:00.000-07:00

I feel horrible so my spunk isn't here today so to start off this awesome month we'll just stick with Addy :) She's what it's all about anyway! Oh how I love my precious girl!

Surgery

2011-09-30T14:23:00.000-07:00

Yes we are looking at another surgery in our future. Fortunately Addy is NOT the one! It's ME! I'm not looking forward to this at all but unfortunately I've had 4 doctors tell me the same thing so I guess I better listen. On November 1st I am having this. Yes the lovely HUGE beasts in my throat must go bye bye. I have asymmetric cryptic tonsils. The cryptic part is not a big deal at all. The asymmetric part is. My left tonsil is far larger than my right, however, both are huge and always are. The concern is tonsil cancer. Yeah, I never had heard of it either! Whenever I do get sick (which I now have lovely bronchitis too) my left ear always hurts, it's due to the hugeness of that left tonsil! So getting them out should help tremendously. I had strep three times within 5 1/2 months. I also get tonsillitis all of the time so it's time for them to go.

I have heard from several people that the recovery for an adult is absolutely horrid. Great. My ENT is ordering that I'm off work for two full weeks, no lifting over 20lbs for 2 weeks (Addy weighs 26lbs), and lots and lots of fluid and rest. He did tell me that if I have bleeding or any other concerns I will have to be off 4-6 weeks. That really won't work! I'm going to be an extremely good girl those two weeks, I know I need to be at school for my clients! I have a wonderful friend that is also a certified SLP that is going to cover for me while I'm gone so that's awesome! Won't have to make up all of those sessions! Another good thing is is that I could lose 10-15lbs! Woo hoo! My weight is a whole other story, it's fine but haven't been losing very much lately :( I'm going in for a lap-band fill next week so that should help, then surgery will really help! I am back to exercising everyday and I'm eating beautifully so that's all good!

I shouldn't have to stay overnight and hopefully will be pampered beyond belief so it's going to be just fine! Right???

No time for anything else/Wordless Wednesday

2011-09-28T17:53:00.001-07:00

Contest, Glasses, Football and Nightgowns ;)

2011-09-24T17:13:00.000-07:00

On Monday morning I checked the status of the Parents Magazine contest that I entered Addy in. She was still number 2 and the voted had ended. I was a little bummed. I know she had a TON of support and votes! It wasn't a big deal, just a little fun! Well, on Tuesday after work I was checking my email and found this:

Congratulations! We are pleased to announce that your entry was selected as a potential prize winner in the Parents Kid of the Year Photo Contest. The prize is a gift card for $250.00.
to see the winning announcement click here

Woo hoo! I was so excited! Addy had been number 2 ALL WEEK! The precious little girl that was number 1 all week was actually dead last at the end of the week so I'm not sure how that happened! Anyway it's a great thing that that card should be coming soon because I just dropped $191 on Addy's new glasses yesterday :/! She lost her new pair (from May). We have no clue where they are, we took the car and house apart. I'm pretty sure she threw them away. Ugh. Fortunately she had her old ones to get by but they were the wrong script. We picked up her new PURPLE glasses yesterday :) We're hoping they will be easier to see than her light pink ones! Dr. Pierce (whom I love I tell ya) came to see us as we were picking them up and I told him how she is really fighting wearing her specs. He thinks that they just aren't fitting right so he talked with the lady that was adjusting them and he was very specific on what he wanted. She worked and worked. Addy smiled at herself in the mirror and walked around saying "purple glasses". We got in the car and in about 1.2 seconds they went flying to the back of the van :( I'm thinking that may have just become a habit. She keeps them on at school and when we are out, it's just in the car and at home. Which is strange because we always have her wear them. Now I'm paranoid to since she is mobile and we already have one pair MIA I was pretty lax about it today. She disappears and so do they! I didn't get a pic yet, I'll post one later, they're pretty cute :)

Today Jake (#52) played his first football game of the season. He had a game last week but it was canceled due to lightening. I was at an amazing DS conference (will post more on that later) so I'm glad I didn't end up missing it! Our team lost by two (I think). They played really well, it's amazing the difference in fourth and fifth grade football! I have no idea what Jake's positions are, he's told me a million times but I can never remember! He was a blocker, that I know! I think he's the only one that comes home with a clean uniform. I swear that kid gets filthy all week and you put him on the football field and all of his aggressiveness is gone! So not his usual self, he's pretty timid on the field but he's better than last year. At least this year he is usually where the ball is and not lagging behind :)

I went to my brother and sister-in-laws yesterday to pick up a power washer to clean the lovely gunk off our siding, it's time! I have to do it tomorrow after Scott puts the darn thing together for me! While I was there my SIL gave me 7 tubs of clothes!!! Jake and Addy and I spent most of the evening going through them! (Cooper went camping with Youth Group from church and had a blast!) He was thrilled with some of his hand me downs and Addy will have quite a bit once she grows! I was able to put a nightgown on her for the first time, I never could before because she always got tangled in them crawling! It's a 3T so it's pretty big on her but it's cute :)

Addy's birthday is less than a month away and I have no idea what to do. Have a party? Just have a family gathering? (which most likely will just be us) or just do her celebration at school? It's so hard to plan a party for her, she doesn't like inflatables, eating, dressing up etc. So I'm a little stuck what to do. She does have friends at school and church we can invite. Not sure they would come but we could try. As you can see in my header pic Addy does have quite a following at recess! Those precious boys sit with her as she demands which songs they sing. There is a set of twins that always play with her, they are sooo cute! Love them!

First day of AUTUMN

2011-09-21T04:15:00.000-07:00

I fell in LOVE with this precious little girl on Reece's Rainbow one day, Donna, probably because she reminds me of a certain little someone that I absolutely ADORE!

Well, this precious little girl's name is going to be AUTUMN QUINN! Her family is in the process of raising funds to help bring her home and save her from a life in an institution. Children in Eastern Europe that have special needs are usually transferred to an institution by the age of 4 and over 80% die within a year. The Quinns are doing everything they can to get to her soon! So I am hosting a fundriaser for this family to help bring AUTUMN home! I am an Avon Representative and for the next week, the first week of AUTUMN I will donate all of my profits this week to their adoption fundraiser! So please visit my Avon page here. You will also get free shipping with all orders over $10 when you enter the code AUTUMN2011!!! You can't beat that! So please go and make an order to help bring AUTUMN home!

Another milestone!

2011-09-17T17:04:00.000-07:00

(this is a cell phone pic after therapy, you get the idea!)

Addy had a huge milestone at feeding therapy on Wednesday! I have it on video but it's on my phone and it's too large to send to my computer apparently so I just have still pix of Addy's latest skill!

At therapy she was using a curved spoon so she did much better than these pix show but you get the idea! I am ordering curved spoons! I'm going to get both right and left handed because she uses her left at home and her right at therapy and school so I want to have both sides covered! She definitely wears more than she swallows, but the proof is in the tube :) she is definitely swallowing it!

Parents Magazine

2011-09-12T17:45:00.000-07:00

Addy is in a contest for this week for Parents Magazine :) Please click the link and vote for Addy! You can vote until the 18th of September, so please go daily!!! Thanks!

http://photos.parents.com/kid-of-the-year/37/2011/19?esrc=nwphotofaves_koty

The Amazing Race

2011-09-11T08:33:00.000-07:00

Yesterday Scott, the boys and I headed to Springfield to participate in a Geocaching Amazing Race event around the city. It was a 10 hour race! If you don't know what Geocaching is click here. It was pretty much just like The Amazing Race you see on CBS :) complete with Road Blocks, detours and mandatory rest periods. We had sooo much fun! It was a great day, gorgeous weather (until the afternoon rain), no fighting and no really stressful times! The funny thing is, Scott is the expert Geocacher and he is the one who made mistakes!

We started off with our first clue and we were sent to a Rest Stop right off the bat. Also in our big envelope was a little one that said "Your Key to Success" on it. Assuming we needed to do that first to do the race we went to the coordinates on the card. We ended up at The Library Center . A couple of other teams were there and appeared to know what they were doing and we were clueless, we only had the coordinates, no clue about what to do. So we decided to go on to our first destination Wilson's Creek National Battlefield. We had to watch a movie and answer some questions for the challenge. There were also several bonus questions to answer and we got most of them. We enjoyed that stop, so much history there! Our next clue was completely backwards but it led us to The Library Center for real! We had to find a fake reference book with our clue. There is a huge line of authors' names on the floor that we had to find in a word search on the back of the clue. So I started that because I am the puzzle whiz :) it was taking a long time, I think we were there an hour before Scott heard another team say that they would go on to their next destination and work on the puzzle later. HUH??? Scott had missed the OTHER piece of paper in our clue that led us to our next destination! We had wasted over an hour!!! The word search was all bonus but still! So we figured out our next clue and headed to the Springfield Nature Center. We all talked on the way there that we would be much more careful and attentive this time! We rocked that one! We had to answer some questions on a page about several exhibits. I held onto the clue and we would each be assigned a question to answer. We only had trouble with a couple of questions but we got them! Jake even found a bonus cache at our check in point an scored us 3 bonus points :) Our next clue led us to a park to participate in a round of Disc Golf. Only one person could participate. However, they were blindfolded (with a Tiger Woods mask) so other team members could lead them. Jake was the thrower, Scott was the voice to throw to and Cooper and I led Jake to the disc. It was so fun! He did really well, got it 4 throws!

Then we headed to The Discovery Center for our first Road Block. The player had to build a 7 foot tower out of blocks. One person could assist after the tower got tall enough that the builder needed a chair. This challenge was mine! I got it about 5 feet tall and it crashed! UGH! Then I got it and Scott helped steady it at the very end and I got it within 15 minutes! Pretty good I thought! My boys were cheering me on too :) Jake wandered out front and found another bonus cache! Way to go GEOJAKE8!

Our next clue sent us to the Missouri Department of Conservation. We had to see Mark Kee for our clue ;) Mark Kee was obviously a marquis in the window of the door :) It gave us the coordinates to get our clue which was behind the building in black and white balloons. We had to pop the balloon for our coordinates. It then sent us to Reliable Scion. There we had a Detour. We could either Build It or Count It. With two people with autism on our team we definitely chose Count It lol. We had to count the number of parking spaces in the first three rows of the lot between two signs. Scott decided to split the autism and he worked with Jake and Cooper worked with me. We were in charge of counting the first row and Scott and Jake worked on the other two. The first time we counted Cooper and I got 67 spaces and Scott and Jake got 88. NOPE! So we tried again, there were two spaces that Scott wasn't sure if they were spaces or not. Still wrong! So the third time we counted I counted the rows 2 and 3. Count on row 1 never changed ;) So third time was the charm and we got it! Sooo once again the expert numbers dude screwed up! LOL! Our next clue sent us to Dickerson Park Zoo. Once again we were hit with a Road Block. This one was listed as Kid Friendly so we gave it to Cooper ;) he had to feed a giraffe :) perfect for him, nice and easy!

Jake Planking

Our next clue had a Zooduku puzzle to figure out for our next set of coordinates. We solved that and it sent us to Springfield/Branson National Airport. All we had to do there was find a sign that had our next coordinates on it. We then went to Rutledge Wilson Farms. What a fun place! I'd never been there before and we will definitely go back! We had a Detour here too. We had to Pump It or Milk It. We chose Milk It. We had to find Irene the Dairy Queen cow to milk. We found her pretty quickly and milked her really fast! We were given our next clue that had coordinates on it in the middle of the cornfield. Scott left his GPS in the car! Seriously??? So Jake went back for it as Scott headed on out to the field. Cooper and I worked on some bonus questions and he even took some pictures of the animals. I'm definitely taking Addy there soon, I think she'll love it! We all headed out to meet Scott in the middle of the cornfield, crazy in there! He had to find our team number's coin in a jar of about 100 coins and take it back for our next clue. We were running and it was crazy!

Cooper's awesome picture of the piglets ;)

We got our next clue which then sent us to Wing Stop. Another team had always been just a step in front of us the whole race and were finally leaving a stop before them but they still beat us there! This was another Road Block. Fortunately Scott is an expert wing eater and this was a no brainer, he was taking this challenge. He had to eat 3 Atomic wings for our next clue. He started after the person in front of us and I'm pretty sure he had them all eaten in about 15 seconds!

We were off for our next destination, Bass Pro Shops. Our clue led us to find the GPSs which was pretty easy. There was a sign there with our coordinates for our next destination on the sign. We took a little bit of time to find some bonus questions while we were there. If you don't have a Bass Pro, there's really no other store like it! Our coordinates sent us to Lake Springfield for our next challenge. Once we got there it was the last road block so we knew that it was all Jake. He was so excited! He got to kayak across the lake to get our next clue. Scott was able to go too to make sure Jake was safe :) Right when they got back it started raining :( Scott said our last clue was our pit stop finish!

We had to finish the race within 10.5 hours and we still had over 2 hours before we had to check in so we decided to go for the bonus destination the Missouri Sports Hall of Fame. It was raining pretty good so I didn't get pix of us there but the boys really enjoyed this stop too. There are busts of famous Missouri athletes with information about them on a plaque that we had to answer questions about. I think we did it pretty quickly too :) Then we finally headed to the Pit Stop. We were all beginning to drag! They had bbq ready for us, Cooper was thrilled! All in all we had an amazing day and had soo much fun! We didn't win since we had overlooked some simple bonus points and simple caches at all of the stations too!

We also had a gorgeous double rainbow once we got to the Pit Stop too :)

Jake did win an electric box to hide a cache in and Scott won 4 day passes to Doling Park so that's going to be fun! What a day we had! Sooo much fun and we are so thankful that we had an amazing friend offer to keep Addy for us, there is no way we could have done it with her! But since this post was lacking an Addy update, here ya go!

Oh Yes She Did!!!

2011-09-01T18:00:00.001-07:00

Soo we just started this whole straw thing and Addy is totally taking off!! She is now able to suck the liquid up all by herself! She needs no help at all squeezing the bear!!

I put a little strawberry quik in her formula (which is unflavored, yuck!) and she went and got it off of the table by herself and started drinking it! The pix are awful, it was a spur of the moment opportunity!

If you are a friend on facebook (if you're not you should be!) you already know about this:

Yes my poor van got sideswiped by a pole while it was on vacation to Nevada with Scott :( now to find the $500 deductible :(

Yeah!!!

2011-08-27T13:52:00.000-07:00

Hello drinking from a straw! Nice to meet ya!!! I pulled out the Honey Bear Straw last night and Addy is loving it! She has never responded to it before! She has actually been able to suck a little by herself too!

Soo much better!!!

2011-08-27T07:20:00.001-07:00

I tried to get Addy to stand for a cute picture since it's been awhile since I posted a happy, smiley pic. in her new favorite shirt that she picked out. She kept walking off. That is definitely a good thing!

Addy had a good week considering she is fighting three different infections! I took her to the doc on Wednesday due to her g-tube had that lovely green gunk and her eye was red and she still had blisters on her mouth.

She was diagnosed with Stomatitis (the blisters around her mouth), g-tube infection and her eye was infected due to having an issue with her sinuses! She did NOT have hand/foot/mouth (which many people told me she did even though I kept saying it was not like it at all) or pink eye (which I also knew was not the issue) :) So she is now on Omnicef to help with the g-tube infection and an antibiotic eye drop for the eye. The Stomatitis could be caused by many things. Fortunately she just had her iron level checked last week and it was 13.1 so she is fine there. All of her nutrition doesn't change since her formula is her sole form of nutrition at this point. So not sure what caused it, we brush her teeth every day so I'm hoping that poor oral hygiene isn't the issue! She goes to the dentist soon so we'll make sure nothing is going on there.

On to the g-tube. I have found out that I think we are the only family that gets ONE g-tube per year. Yes you read that right, ONE! It is NOT an insurance thing, we can have 4 paid by our primary insurance. If we would need more, her supplemental Medicaid would kick in. It's the Nurse Practitioner that is in charge of g-tubes. She doesn't think tubes need to be replaced more than once a year unless it is broken. She has been with Addy since we brought her home. She was involved in all of Addy's surgeries (jg tube placement, analplasty, colostomy takedown etc.) I really trust her with the care of Addy. However, this whole one tube thing really gets to me. I know MANY of you change g-tubes yourselves at home all of the time!!! I have beyond capable nurses in my home all week that could change them too. Another thing... when Addy needs a new tube, we have to be checked into the hospital. Yes admitted! Then we go up to the PICU, yes the Pediatric Intensive Care Unit to have the button replaced. It takes forever sometimes and who knows what we are exposed to when we are in the unit. Fortunately we are a little separated, but still. When I took Addy to her pediatrician she didn't know who the NP was in charge of her tube because she's in a different network. She immediately got on the phone to talk to her about Addy's seriously infected stoma and the nasty looking tube. The water in her balloon is constantly turning a nasty yellow. The NP said that sometimes the water in the balloon can be black and it's fine. I totally don't agree with this. Fortunately my ped told the NP that since Addy has an infection she wants a few days on the antibiotics and then a new tube placed. So we will be going in next week to get it changed. I am praying for the day that we say bye bye to this tube :)

Addy had a great first week of school and is jabbering up a storm there! She didn't really say anything at school last year. Her teacher told me she's pretty sure Addy told her off about something :) Fortunately she couldn't understand her! I hear it's a real trip to watch Addy lead the Pledge of Allegiance, can't wait to video that! She loved music of course and is interacting more with the kids, being vertical is helping SOOO much! I'm so proud of my girl!

Look how well her hair is already growing back!

Cooper brought home a fundraiser for band, cookie dough, pizzas, candy etc. this week and Jake just got a cookie dough fundraiser from football sign ups. I think it's time to make a trip to visit Springfield and visit Grandmama!

Random Addy issues

2011-08-23T18:16:00.000-07:00

Well, so much to report! All of Addy's stool samples came back negative so she just had some sort of virus. No Rotavius, C-Diff, parasites, blood in stool etc :) She has been fine yesterday and today. Absolutely loving school of course :) She was line leader today. It was a very slow line :) She's walking well at school in the classroom. She needs a little prodding to walk but she's doing it :)

I had to work late but when I got home Nurse Kim had given Addy her bath (she is an absolute angel on earth!) and noticed that Addy's g-tube had some puss coming out of one side :( It's been really gunky lately and leaking some but now it looks like it may be infected :( So it looks like we'll be making a trip to the pediatrician tomorrow.

When I put her in her high chair for dinner I noticed that her left eye was red. I just assumed that I may have scratched it with her bib. However, it is still red over an hour later! Not sure what that's about!

I finally hung up Addy's backpack holder :) She's very proud of her "Punzel" backpack :) I had to hang it sooo low so she could hang it up by herself :) She is such a tiny little peanut!

First Day of PreK

2011-08-22T17:00:00.001-07:00

I am so happy to report that Addy felt well enough to go to school today! I got horrible pix, so sorry! She had a great day! She did a lot of walking but I didn't get any pix of that. I figured she would take a great nap but she didn't nap at all! Crazy! She is sooo sleepy, she's going to be out in the next half hour or so :)

This is getting old

2011-08-21T05:47:00.000-07:00

I wish I knew what was going on with Addy. She was cranky all day yesterday. Seriously ALL DAY. She rarely fusses and she was either whining or crying all day. She didn't nap either which made it worse. She slept well last night though. Didn't wake up with a smile but wasn't crying.

This morning she ate breakfast pretty well and asked to watch Signing Time and now she's folded over on the chair just staring around. She hasn't had loose stool since Thursday morning and no fever since Thursday either. She still has the one big blister on her bottom lip. She's supposed to start school tomorrow but if she is acting like this there's no way she can handle three hours at school. I guess I'll see how the rest of the day goes :( I haven't heard anything about the samples that the nurse took in on Friday. I imagine since it's a weekend I'll have to wait until tomorrow morning to hear anything.

this one looks painful

2011-08-19T16:43:00.001-07:00

Because it is OUR problem

2011-08-18T20:43:00.000-07:00

this post is copied from Adeye's blog, do not ignore this if you have no idea who Adeye is, this is our problem.

"Sometimes I would like to ask God why he allows poverty, famine and injustice in the world, when He could do something about it...but I'm afraid He may ask me the same question." Anonymous.

Honestly? I don't even know how to write this post! I have sat staring at a few pictures for the last few days, thinking, "How in the world do I even put this atrocity into words?" I am not the most eloquent with words at the best of times--but this--this is absolutely heart-wrenching.

Type. Delete. Type. Delete. Sometimes, the right words are just so hard to find.

Allow me to introduce you to a very special little girl. This is Liliana (not her real name).

Isn't she so beautiful?

The above pictures were taken about two years ago. Sweet Liliana was nine years old at the time. Nine! In spite of her tiny size, she actually seemed to be doing alright when these were taken, judging from the pictures. I can totally handle these photos.

Unfortunately for Liliana, no one ever came for her. She was never rescued. And added to that, she lives in a country which, very sadly, sees no worth or value in those who have special needs. Nothing, and I mean nothing, could ever have prepared me for the latest pictures of her.

Friends, the pictures below are hard to look at. They just are. No doubt about it. For some, they are too hard to look at. Many would even choose to turn their backs, and as the president of World Vision, Richard Stearns, so accurately said, they would say, "Sorry, not my problem!" It's hard for us to face reality such as this. It's almost impossible for us to even wrap our heads around the gravity of a situation like this. Sometimes it is so much easier to live in our four walls and NOT know what happens on the other side. It's comfortable there. I know, because I have been there, done that.

But how can we possibly say that this is not our problem?

These pictures were taken this month.

Liliana is now eleven years old. Yup, ELEVEN. Her weight? Ten pounds! That's not a typo. TEN measly little pounds. My babies were born weighing ten pounds, for goodness sakes. I have no idea how Liliana has even survived this long. She's a fighter--a survivor, for sure.

She is nothing but skin and bones. It's pathetic. I even have her measurements. Her wrist is three inches around. Her upper arm is three inches around. Her legs are 13 inches long, hip to heel. Her head is 16 inches in circumference. Her foot is four inches long. You have got to be kidding me.

For crying out loud....She is eleven years old!

How the Father must weep at what He sees.

How is it even possible for a little girl with Down syndrome to be allowed to literally waste away in a crib? Be starved of adequate nutrition? Be so emaciated that her skin looks like it is about to tear?

This is real life. This is what happens to millions of children just like Liliana--the ones who lie confined to metal cages their entire lives. The ones who suffer at the hands of humans who simply just do not care that all life is precious and valuable.

Of course this is our problem! "Our," as in all Christians, that is. We're the ones whom the Father has commanded to "care for the widows and the orphans" (as it says in the book of James).

We cannot turn a blind eye, walk away, and forget about the atrocious catastrophe that happens to the fatherless. We simply cannot. Yes, there are times when God calls us to pray as a body--to come together in unison and trust Him to move a seemingly impossible mountain. But then there are the other times. The ones where we are spurred into action.

There are times when we are called to rally for the sake of another human being--one who will never be able to pay us back or give us a single thing in return. As John Wooden once said, "You cannot live a perfect day without doing something for someone who will never be able to repay you."

I'll be honest with you. These pictures of Liliana make me so fuming mad. The injustice of it all makes me feel physically sick. They make me want to fight for the orphan all the days God grants me breath on this earth. These pictures make me want to scream at the top of my lungs, "This IS our problem!"

So, because this IS my problem, I knew that sitting back and not doing a darn thing simply was not an option. I cannot travel to the other side of the world and bring this darling home. We don't qualify. But doggone it, I sure can try to do everything in my power to make sure that she does come home, and that finances are the last thing her family needs to worry about as they scramble to get the necessary paperwork together. Getting there as fast as is humanly possible is the only thing they should have to worry about. We really do not have to adopt a child to make a profound difference in their lives. Just give--a little or a lot. Give what you can and watch God multiply it. It's the loaves and the fishes stuff.

Together, we can make a HUGE difference!

Liliana's greatest need right now is the ransom

Oh, sweet girl, hang in there. Don't give up! Please, please hang on. Help is on the way.

Yesterday I made an appeal to my lovely blog readers for a few items to give away as part of a fundraiser for precious Liliana. As usual, I was blown away. God's people really do astound me. Some had already seen Liliana's picture doing the rounds and were so eager to jump in and help out. I have put a Chip-In at the top of this post. The total is set at $22,000.00. Sounds like a whole lot of money--yet nothing in God's economy. Nothing for the sake of a child.

And so today I come to you pleading for help. Yes, I'm begging again. Please would you consider sowing seed into Liliana's grant fund? Every little bit donated will add up and become such a huge blessing to the family whom God raises up to rescue this angel.

We're raising the ransom here! This is Liliana's deliverance. It's her redemption!

My friends, The Malones, who run an amazing ministry which helps orphans called the Eli Project (who you may remember from Vanya's fundraiser) have graciously agreed to receive all the funds donated for Liliana in their non-profit. Every single dollar donated will go to the family who adopts her and the money will be dispersed by the Eli Project. The Malones have such huge hearts for the orphan--they definitely walk the talk and I love that about them.

Goodness gracious, the list of giveaway items below is absolutely awesome! People sure have opened their hearts to a little girl so desperately needing to be rescued and they have donated some fabulous things. This is a giveaway so all winners will be chosen at random by an automated selection program.

Also, would you please help us by spreading Liliana's fundraiser to anyone you know? Please share her story on blogs and social networks so that one teeny, tiny little life can be redeemed and beauty can rise from these ashes. I appreciate that so much. We're stretching our faith to trust the Lord for a fully funded adoption.

Here's how this will work:

~~~ Receive one entry for each donation you make in the Chip-In.
~~~ Receive a second entry when you mention this giveaway on your own blog.
~~~ Receive a third entry for mentioning it on your Facebook or Twitter.

Please remember to leave separate comments for each of the above categories.

Below are the amazing items which are up for grabs. Thank you, thank you to the incredible friends who donated them. I am so thankful for the outpouring of love for sweet Liliana.

"NOW....show us your glory, Lord!" Exodus 33:18

~~~~~~~~

Nikon D3000 Camera

Valued at $500

~~~~~~~~~

TWO iPads

32GB

Valued at over $600 each..

~~~~~~~

A $500 Target Gift Card

~~~~~~~

A $500 Walmart Gift Card

~~~~~~~

$200 Gift Certificate from Posh Tots

~~~~~~~

A Classic White Moses Basket with Minky

From Posh Tots

~~~~~~~

A Coach Purse

Valued at over $400

~~~~~~~

A Coach Purse

Valued at over $400

~~~~~~~

FIVE Amazon Gift Cards!!!

1 x $100

1 x $75

~~~~~~~

An iPod Nano

Valued at $140

~~~~~~~

Wii Band Hero

Valued at $180

~~~~~~~

FIVE Kindles!!!

~~~~~~~

TWO gift certificates to:

Petite Baubles Boutique

(medic alert and ID bracelets)

1 x $50

1 x $25

~~~~~~~

A Choice of THREE bracelets from:

Orphaned No More

~~~~~~~

TWO iTunes Gift Cards

1 x $100
1 x $25

~~~~~~~

$100 Lowes Gift Card

~~~~~~~

Pandigital Novel e-Reader

Valued at $170

~~~~~~~

$200 Gift Card to Christian Book Distributors

~~~~~~~

Creative Memories Gift Hamper

Valued at $200

First Day of School and Blisters

2011-08-18T14:49:00.000-07:00

The boys started 5th and 7th grade today :) they both had a good day and were glad to be back at school!

The doctor has order cultures for Addy and naturally we are having to wait for her to provide! Any other day it would be no problem! Hopefully we will have enough collected so they can be ran tomorrow. One of the nurses from Addy's home health agency is even going to take it to Springfield for me! How awesome is that!?!? That really helps me out! You can sort of tell in the picture that she is now breaking out in little blisters on her mouth. She's been so dry that I thought was what is was but now it's definitely looking like blisters. Not sure what that's about!

Addy has her Sneak Peak at preschool tonight but obviously she isn't going :( It makes me sad that she can't go but I'm sure the other parents will appreciate me not bringing her with who knows what that could be contagious! I'm really hoping and praying that she improves and is able to go to her first day of pres-K on Monday!

Poor Baby

2011-08-17T19:15:00.000-07:00

This poor girl! She has been sick since Saturday. She only urinated 3 times today. For her, that's crazy! She usually goes at least 10 times. She's not dehydrated enough to need an IV (thank goodness) but the doc is going to run stool samples since now she is having the diarrhea issues :( I think it's Rotavirus or something like that, I don't think it's C-Diff this time but you never know. They are also going to test for parasites (yikes) and E-Coli. They asked if she's been swimming in a public pool or drinking well water. Hmmm if you scroll down I think you get your answer. Our city water is just one big well so who knows.

Today is Scott and I's 15th Wedding Anniversary. Too bad we have a sick baby and couldn't go out :( He woke up with a migraine (ugh) and I had to work today. He did go grocery shopping for me this afternoon which was wonderful! I absolutely hate that job!

The boys start school tomorrow! Addy has an ice cream social tomorrow night for her preschool which starts on Monday. I have a sneaking suspicion that she will not be able to attend :(

Puny

2011-08-14T17:36:00.001-07:00

Poor Addy has been sick all weekend. It started yesterday morning, she vomited up all of her breakfast. She hasn't thrown up in a really long time. She acted ok afterward, wasn't acting off or anything for awhile. A little later she was running a fever so I gave her some pedialyte and tylenol and she held that down ok. She seemed fine at lunch time so I went ahead and gave her her usual feed (didn't oral feed though) and she held it down fine. I went to Springfield to get things for my classroom and Scott said she slept well and was just a little lethargic when she got up. She was running another low temp so I gave her some more pedialyte and not 5 minutes later every drop came back up! She was still not 100% but acting ok. I went to Bunco and Scott texted me to let me know that she had been hiccuping for about 30 minutes and was afraid to feed her so he just gave her some water before bedtime and she held it down.

This morning when she got up she looked awful. As you can see in the picture she's pretty pale too. She was definitely showing signs of dehydration and had a full, messy diaper, and temp again. So I gave her just a couple of ounces of formula/pedialyte mixture with tylenol and she held it down. After her feeding she instantly fell asleep on me. I went on to church and Scott gave her more of the pedialyte/formula mixture a couple hours later and held it down. She has held down the mixture feeding all day, but was really tired and crabby. I'm hoping she is much better tomorrow and is back to her old self. I started work on Friday so I won't be home with her tomorrow. Thank goodness her nurse will be here to take care of her in case it's longer than a 48 hour bug!

Gotta LOVE a deal!

2011-08-13T09:43:00.000-07:00

I got these 11 pairs of shoes for Addy on an on-line "yard sale" for $20! They all look brand new! I think this girl is going to be set for shoes this fall!

Jordan Valley Fountains

2011-08-11T11:31:00.000-07:00

Today is the last day of my summer vacation and I have made it a point to have a good time! I met up with a friend of mine this morning with our kids at Jordan Valley where they have a fun little water fountain that the kids can play in. April and I have been friends since kindergarten! It was soo nice this morning, in the lower 80s, so perfect for some fun in the sun. The pix look like Addy had a horrible time but she really did have fun. It took her a little while to decide she liked the spraying water but she did unless it got her in the eyes, which I think it did often! When I first put her in the middle of the shooting water she stood up and walked out of it! She is doing sooo well walking in environments besides our home!!! The boys had a blast and I really enjoyed getting to talk with April, a perfect little morning!! Now I get to spend my afternoon getting pampered by getting my hair done :) Not sure what I'm going to do with it yet, I still have an hour to decide :)

Addy is really not sure about this yet!
Inching a little closer :)

Better Day

2011-08-09T16:47:00.001-07:00

I've had a better day today :) My mood isn't 100% me but I'm much better. This definitely helped :)
Addy's communication skills are blossoming right now. She kept saying Toy Story "sowy" in Addy speak, and pointing to the tv.

She got tired of waiting for me to obey her command so she took off.

She was just heading to do it herself :)

How cute is that little waddle walk???

Hmmm Daddy brought something home for Mommy!

Smelling the sweet flowers. Of course when you ask Addy to smell, she blows :)

Thanks for the pick me up honey, I have REALLY needed a little something!

Addy's 4th Gotcha Day! at OneTrueMedia.com

2011-08-06T16:06:00.001-07:00

Make an on-line slideshow at www.OneTrueMedia.com

Swimming

2011-08-05T09:36:00.000-07:00

We went to a pool party the other night and had so much fun! We haven't been able to take Addy swimming during the day, it's just been too hot. Even with her being in the water all of the time she overheats so having a pool party at night was perfect! She had so much fun and she loved playing ball! Cooper and Jake spent most of the night on the diving board :) Jake's getting really good at flipping! This is the first year Cooper has jumped off of the board! We are so proud of him!

This is just a funny. I always hang up Addy's clothes to dry. I put these over her closet and went to get another hanger and had to laugh. Do you think we have a princess on our hands?? We decorated her room princess when she was a baby because my dad always called me princess. He passed away one week after Addy was born. I didn't even know she was born yet! He would have loved this girl and she definitely would have been his princess!!!

DSGO Library Center fun

2011-08-02T13:26:00.000-07:00

The kids and I went to Springfield this morning for a little fun at The Library Center with the Down Syndrome Group of the Ozarks. Only three of us showed up but we still had a great time! Addy loved the music time and she did everything that was instructed and followed all of the directions. When they were told to stand up I gave her her walker and she just pushed it out of the way and stood independently :) I know she does this at home but she never has anywhere else :) She did great! I couldn't get in a good spot for pix but you get the idea! Addy also got to see her most favorite person in the world! Mr. Berns, her music teacher at school, was at the library with his precious little girl! Addy was a little confused as to why he was there and not at school, it was quite cute! I wish I could have stayed longer but we were going out to eat (at Red Robin, YUM!) with my mom and to Target for some back to school shopping and get some shampoo for Addy. I was advised to get Paul Mitchell's baby shampoo but they didn't carry it and they recommended Burt's Bees shampoo. We'll try it and see if it helps at all. Addy's poor little head is looking pretty sad. You can't really tell when it's up in a pony tail because some longer hair covers the most bald spot :) I guess if she goes bald we'll just have to get some really cute headbands :) Jake also wants us to pierce her ears too, how cute is he?
Have I mentioned that it's unbearably hot here???

She's so funny :)

2011-08-01T18:28:00.001-07:00

Make video montages at www.OneTrueMedia.com

:(

2011-08-01T16:38:00.000-07:00

This was in Addy's bed after her nap. The really bad thing about losing hair while you are sleeping is that the hair gets all wound around a Mic-Key button :( didn't get pix of that, was trying too hard to get it all out without it hurting Addy!

NOOOOO

2011-07-31T11:35:00.001-07:00

Looks like the little miss is completely on indoor lock down this week! (She's lost hair daily and two big chunks yesterday)

Playroom

2011-07-30T10:15:00.000-07:00

Someone is loving her new playroom today! Addy is not a toy kid. She doesn't really play with toys. She will a little bit when you first give them to her then she pretty much just throws them out of her way :) Today she walked in there (I LOVE saying that!) and she's been actually playing for about an hour! I still have to put some finishing touches on the walls but it's just about complete:)

Read Read Read

2011-07-28T09:56:00.000-07:00

Mommy went to a garage sale and Addy is beyond thrilled with her Zoobooks about chimpanzees :) She's rocking that short ponytail isn't she??

The verdict:: Telogen Effluvium

2011-07-27T17:56:00.000-07:00

According to the doc this is what is happening with Addy's hair. It is a form of nonscarring alopecia characterized by hair shedding. It's a reactive process caused by a metabolic or hormonal stress or by medications. Usually recovery is spontaneous and occurs within 6 months. Both the pharmacist and the pediatrician agree that Addy's medicines are NOT the culprit. Most likely stress. Addy has a pretty stress free life, that's for sure! No real changes, however, we are pushing more oral feedings. She is not upset during feedings, but you can tell she would rather us not be feeding her orally :) One thing that does cause problems for Addy is heat. The heat for the last month has been horrendous here. Addy does not do well with heat and it could be causing internal stress for her :( Addy's scalp does not have any areas of irritation, no rash etc. Today she has been pulling her hair around the bald spot would we have never seen her do. It doesn't appear she is pulling any hair out when she's done this today, no hair in her fingers etc. Doc thinks it's due to the fact that it feels different and may bother her, not hurt her, just irritate

Haircut

2011-07-27T10:26:00.000-07:00

I took Addy for her haircut this morning. It looks soo cute! She had several inches cut off. Becky (our stylist) said that her hair is really thinning. I mean Really Thinning :( She said the ends are tangling because of the thinning :( She honestly thinks it's either medicine or most likely Alopecia. We go to the doc at 4:45 this afternoon. After the haircut we went immediately over to the pharmacy to talk to the pharmacist. After he did some thorough investigating, there is no evidence that her antihistamine causes hair loss. So I guess we wait to see what her pediatrician thinks.

(this is her pouty face since I asked her to take her finger out of her nose and to step away from the TV:)

Trying not to freak out

2011-07-26T19:45:00.000-07:00

(This is just a cute pic of Addy adoring herself :))

Last week while combing Addy's hair after a bath it was more tangled than usual. I put on her detangler and combed her hair, no big deal. I also noticed that some hair came out. Not too concerning, we all lose hair everyday. I just hadn't noticed her hair coming out before.

This weekend Scott was holding Addy and commented that her hair needed to be cut, it was getting a little scraggly (not sure that's a word). I told him that I planned on taking her this week, it is really long. I want to donate it but then it would be super short and I'm not big on super short on Addy, it looks really cute long. So I planned on calling tomorrow for a haircut.

We had a special visitor today so I didn't want to go for a hair cut today anyway!!! Laura really wanted Addy to look at the camera! Too bad Laura didn't look at the same time!

(this pic was taken right before I put her down for nap, you can sort of see the difference)

After Addy's nap she had this HUGE rat on her hair right in front of where her ponytail was. Two of my friends were here with me and saw me trying to get it out. It was pretty comical, I couldn't figure out how she managed to knot it this way. It has NEVER had a "rats nest" in it before! As I was working on it some hair was coming out. More than I've seen. Laura's mom told me that Laura's hair would come out from time to time and not worry about it. She said Laura used to twist her hair and perhaps that's what Addy had done ( I haven't seen her do this, however, she was in her bed for a nap when this happened) She and Laura left and I kept working on the rats nest. As I was working I picked up the "nest" to move it and it completely came off of her head! The entire amount! She now has a bald spot! I'm trying not to freak out. She did start her new med just a couple of weeks ago but I can find no information about hair loss being a side effect. Not on the info from the pharmacy or online.

So tomorrow I'm going to call the doctor to see if she wants to be seen. This amount of hair loss at one time does not seem normal to me at all. I'm going to take her to the beauty shop to have them look at her hair too. The consistency seems different to me, it didn't used to tangle like this. I don't think this is Alopecia but I don't know! Anyone else seen this?

Skirts

2011-07-25T09:53:00.000-07:00

I love skirts and dresses on little girls. Having one that didn't walk we just didn't put them on her very much. She always got stuck on them! I love how she rocks her little skirt! You go Addy!

:)

2011-07-23T13:10:00.000-07:00

Somebody is really glad that her bubbies are home from church camp!