Pneumonia, bottles and baseball :)

I took Addy and little man to Jake's baseball game on Thursday night. It was such a cool evening, it was really nice. Addy was hysterical chasing around my friend's little boy, Kayson. He's 2 1/2 and the cutest thing ever, They're pretty much the same size, he's a tad bigger lol. Here she is watching Jake through the fence, she's a proud little sister.

Jake got to pitch the last few minutes of the game, he was so excited. He's wanted to pitch forever! He did a really good job!

We have now had little man home for a week and everyone has done a fantastic job with adjusting. He may just push Addy into eating orally :)

(just and FYI, that's a clean bottle of WATER for her, I'm not about to let her put his bottle in her mouth, he's not milk free :)

I took Addy back to her pediatrician yesterday for a recheck and she still has that nasty pneumonia :( So double antibiotics and nebs, hoping it kicks it. She's much happier today than we've seen her in awhile so hopefully something is working! She's actually smiling again :)

Adjusting ;)

We are now settled with four kids at home again :) Things are going well and Addy is adjusting nicely to this new little baby person that cries (which she does not like at all!) and eats a bottle which is foreign to her :)  Unfortunately she has pneumonia in her right lung :( Not good! Poor girl! Fortunately I think we caught it early so hopefully the antibiotics and breathing treatments will help quickly!

Addy hates socks and refuses to wear them. I guess that is unless they are brand new baby socks :) She's being very spoiled she has the Ipad and my Iphone, double the Elmo :)

My plan is not always His :)

I'm going to start this post with a little Addy update. Last Wednesday we went to St. Louis for her to have an Upper GI and Rectal Suction Biopsy. We got up and at em early to be on the road to make it by 9 :) She's such a great traveler! Give her some of her favorite music and we are good to go :)

BLOGGER ISN'T LET ME MOVE PICS SORRY THEY ARE OUT OF PLACE!!!

During her upper GI, the radiologist was having a difficult time finding all of her pieces and parts lol. He couldn't quite see how her duodenal atresia was repaired and stated that she had quite a bit of colon removed (from her imperforate anus). She was also showing off her impressive reflux :( She was so good the entire time, she is an amazing little patient!

We had some time to kill so we got something to eat and went to watch the Ball Thingy as we call it lol. Addy loves this thing and will watch it forever! I also made her walk around on these squishy circles and she would step on (doesn't hurt to get a little more sensory input!) and instantly start signing "all done". Sister does NOT like unfamiliar terrain! Getting her to walk on grass is still a major challenge!! I'm hoping recess during summer school is helping that but I sure haven't seen it yet!

During her biopsy she wasn't given any sedation, I was told repeatedly that it was just uncomfortable and wouldn't cause any pain. She did fantastic and didn't really even complain, just a few little grimaces. She's such a trooper!

We got home and I got the results on Monday. No Hirschsprungs :) and her upper GI was typical for her "unusual anatomy". So we got no answers for what is causing this mucous stool. I'm still convinced it's her gallbladder. GI is now discussing what to do next. Most likely it will be an endcoscopy (sedated) and an ultrasound. She's lost almost 2 pounds and definitely didn't have two pounds to lose!!!  Overall, she is better, but still not 100%. Her bottom is much improved but still has some very raw areas. She still seems like she is having belly pain. She isn't having the crying episodes like she was a couple of weeks ago, thank goodness, that just about did me in! I can't stand to see her in pain, you know it's bad when she actually complains of pain! So we are now in a waiting game again.

So now onto His plan :) Many of you know that we have wanted to adopt again forever!!! I truly feel that someday we will be a Reece's Rainbow family but it just hasn't worked out for us. Well I found out the reason for this a little while ago :) His plan is not always ours :) MY plan of a 2-5 year old GIRL from Eastern Europe was in my plan. HIS plan is not that at all! Are we adopting again? No we are not. However, we have been called to be the foster parents of a one month old baby BOY with Down syndrome :) Wasn't expecting this at all but that is what has fallen into place :) We just had a few things to do to finish up or license so it was truly perfect timing! I have my summers off (except for the tiny bit of ESY I'm doing in June) so it really is perfect! We will get to bond and get therapies lined up for the little guy and we're so happy we can do this! I will NOT be posting any pictures of him or talking about him online, so don't ask me to :) I can't, it's to protect him :) I'm blown away by this opportunity and we are really excited! Can't believe we are going to have a newborn in our home again! It's been 11 years! Jake is really excited and Cooper's fine with it :) Addy??? Not sure! I guess we will find out soon! I think she'll be fine but it will be an adjustment for her :) I am going to the hospital where he is tomorrow and plan on bringing him home on Saturday. We would appreciate prayers for a smooth transition in this amazing opportunity and feel truly blessed that we get to be a part of his life :) Yes you can be jealous :)

Sad Step Up

Yesterday was our annual Step Up for Down Syndrome. We look forward to this event every year. We all usually have so much fun. This time it was not our dream day. I am suffering from laryngitis and I'm not feeling all that great, that's just a small whammy against us. Jarika had to work so she was MIA and Cooper is with his church youth choir in Nashville (he's having a great time, said he played Frisbee in Andrew Jackson's backyard yesterday!) so we were down to just two kids which is very weird for us!

As you know Addy has been suffering from some sort of intestinal issue for five weeks now. Yes five weeks. Her bottom is more than raw and she is miserable. Yesterday was one of the worst I have seen her. I was hoping she would be doing pretty well. The doctor had us do 24 hours of Pedialyte on Friday and she barely had any stool that day so we decided to mix her formula with Pedialyte for yesterday to gradually put it back into her system.  Well, she had a pretty big stool yesterday morning before any formula so I wasn't sure if it would work. (It didn't). She wasn't herself in the morning. Just wanted to lay on her side and have Play with me Sesame on. If we moved her or tried to change the channel she began crying. Addy really doesn't cry. Ever. She cries silently at that so she rarely makes a peep when she cries.

We went on to Step Up and let her stay asleep and we drove around for awhile hoping she would be happier when she woke up. She wasn't.  She didn't smile at anyone, wave at anyone, want to dance or sing, nothing. Very atypical of her. She loves music and she didn't even want to sing along or dance with everyone which is out of character for her. I tried the ball pit to no avail, we tried interacting with the Chik Fil A Cow (she loves characters), and we just got tears.
 
We started watching the talent show and they were having problems with the sound system and that just sent her over the edge. I took her out for awhile, Scott took her out for awhile and we just couldn't calm her down. She was actually crying out-loud :( She was drawing her little legs up like her belly hurt so we gave her a small feeding with some Tylenol and after about 20 minutes she was calm enough to hang on to her nurse, Alicia's phone and watched Elmo without distress.

We did out walk (we didn't even attempt to have her walk) and she just stared around and didn't wave at a soul :( she did give Louie Bird a half attempt at a high five though :)
 
We were hoping that once we got seated she would improve but she just didn't :( Jake was playing musical chairs during the fifth inning so we knew we wanted to at least stay for that so he could play. He was really looking forward to it :) He didn't win but he had fun. Our good buddy TJ won though!

Addy was miserable and we packed it up and headed home. I gave her a feeding before we left and she did seem to improve some on the way home. Thank goodness for Jack Hartmann, he got her to sing a bit.

She watched some Sesame Street before going to bed and is still asleep now. I'm hoping that today is a much better day for her. I am so tired of seeing her hurting. I am so frustrated and my heart is breaking for her. I can't imagine the pain she is in :( I was supposed to get a call from St. Louis on Friday (but I didn't) to come in this week for a rectal biopsy and upper GI to see if she does indeed have Hirschsprungs or some other problem. She isn't absorbing her feeds correctly either. Usually before a feeding we burp her tube and get tons of air out. For the past few weeks she's had at least 60cc of reserve in her belly which is not normal at all.  Please pray for my sweet girl, I hate seeing her this way and want her to get better. Five weeks of this has been entirely too long!

Spring Dance Recital :)

Addy had her spring dance recital today and she did so great! At Christmas time she just sat the entire time lol. She still does NOT want to stand in her tap shoes, she slides too much in them and it scares her so I can't say that I blame her!

I am so thankful that God put Mrs. Jennifer Carter in our lives and has loved and accepted Addy for who she is and loves having her in class :) Addy has made a lot of progress since she first started, I'm so proud of her :) I'm sure there were some people in the stands that thought "why is that little girl even doing this?". But idk, maybe not, but I will say that Addy is included and is learning from doing dance and I am so thankful that she's involved :)

 Now enjoy the amazing cuteness!!! So proud of my amazing girl!

St. Louis visit

Well, we had a jam packed visit to St. Louis! We got there just in time for Addy's GI appointment that we just got on Monday :) The GI is the one we've seen before and she even called in the other GI we've seen before too. They agree that something isn't right, however, it could still be a virus. However, they want to rule things out just to be safe. They took some blood and did an abdominal x-ray. I had to drop off another stool sample yesterday before we left.  Addy could possibly have a blockage which lets the loose stool pass. They mentioned Hirschsprungs Disease but don't really think that's what it is but if the blood work and x-ray and stool don't show anything then they will do another upper GI and rectal biopsy. So now I'm just waiting for the phone call to see if any more tests need to be run.

Tuesday night we went to the Cardinals game to celebrate my nephews graduation :) We had a great time, Cooper was in hog heaven, we were in a skybox so he could eat all he wanted! He was cracking us up! He acted like we'd never fed him before! Addy was super tired and was having a hard time dealing with a lot of the noise :( poor baby! Jake decided to start this nasty cough that hasn't even budged so we are heading out to the doc in a few.

On Wednesday we went to the zoo and loved it! Our zoo that's close isn't that great so it was so nice to see things that we don't see here! Naturally Addy's favorites were the chimps! One kept giving Jake a high five through the glass :) It took a lot of coaxing to get her away from those monkeys!!! She was also very impressed with the penguins! One jumped and splashed right in front of her and she was cracking up! It was so cute!! She was also amazed with a peacock that she wanted to play with so badly! She touched his back and spooked him, it was so funny! Jake was so concerned he was going to peck her! Fortunately, we were right there and she was fine!

 Tickling the chimp's toes :)

Poor girl was soo tired after the zoo, lunch, and a trip to Ted Drewe's that by the time we got to John's graduation she was DONE! We made it through and then she was so overtired she wouldn't go to sleep in the car! Addy LOVES John and he is pretty smitten with her :) We finally put on Signing Time and she was singing away then finally zonked out! It was a nice little getaway, just missed our big girl! Jarika did call to let me know that she got 4 As and 1 B this semester! We are sooo proud of her! She's doing so great, we couldn't be happier for her!!!

A little update and an IEP :)

I so appreciate everyone's input about my sweet Addy boo. First off, her bottom is somewhat better after starting the antibiotic and anti-yeast medication. To address some of the suggestions and questions...We haven't used baby wipes on Addy in well over a year and a half. Addy has had a previous reaction to Pampers diapers and obviously we stopped using them. She has worn Huggies Supreme or Cuties without any problems so I don't think they could be the culprit. We gave Addy a 24 hour belly rest and she strictly had Pedialyte yesterday. She still has the diarrhea today but she seems to have more energy and is happy. She was NOT happy last night. Not sure if the electrolytes helped or what. The bright redness on her bottom is better, definitely not gone but better. She does still have areas of bleeding. We have seriously tried every diaper remedy known to man. We are currently using a mixture of  Nystatin powder, Zinc (40%), Hydrocortisone, and Triple Antibiotic ointment. We are also using the Bag Balm. We do let her "air out". Every diaper change she is dried with a hair dryer to make sure we aren't trapping in any moisture with the barrier. I am going to follow doctors orders and follow up Monday. If we are still having an issue on Tuesday when we are in St. Louis we will go by the hospital. If we are blown off, there's more than one :)



she still spends a lot of time on her belly since it hurts to walk and sit :(

Today was Addy's last day of Pre-K :) I couldn't be happier with her progress this year. She has done fantastic even with missing 21 days of school. We had her kindergarten IEP meeting yesterday and I am pleased with her plan for next year. I wish she could spend a little more time with her peers but unfortunately she really needs the therapy too! It's a double edge sword! Here is her plan right now, as we all know, IEPs are not written in stone and things can always change :) I'm just going to give a little snipet of it, no one wants to read an entire IEP!


Addy with her amazing team :) Ms. Melissa, Ms. Debbie and Ms. Deborah


Our concerns were addressed: we want her in the regular classroom as much as possible. We have requested that we are given her schedule prior to school starting (as much as possible, I know not everyone schedules before school) so we know what she may be missing in the regular classroom, we do not want her assigned to just one paraprofessional, we don't want her dependent on an adult so we have requested that the para just to shadow Addy at this time and give her minimal assistance, we want the para to keep her on task, guide with hand writing etc. We want Addy's work to be hers :)

Addy's special education services will include the following:
30 minutes per day in the Resource Room for task completion
30 minutes per week of Adapted Physical Education

Related Services:
Occupational Therapy 60 minutes per week
Physical Therapy 90 minutes per week
Language Therapy 75 minutes per week
Speech Therapy 75 minutes per week

Soo... Addy will 77% of her week with her typical peers in her kindergarten classroom (she will have a para with her, but like I stated, we want them just to assist if necessary).  At this time we have also requested that Addy not participate in Regular PE and Art. PE just isn't safe for her, she just isn't stable enough (she's already been knocked down) . Art isn't appropriate either, she just doesn't have the motor skills. So hopefully she will be able to go to get her Resource minutes at that time or a therapy. The problem with that is, our special classes are on a five day rotation and they don't always stay on the same days so that may make scheduling a little messy since she will be participating in Library, Music and Computer Lab. I hate scheduling, so glad I don't have to figure out Addy's!

The boys have their last day of school tomorrow. They will both be in Junior High next year :) So bizarre to think that is even possible!