Deep Breath!

When school starts Kaylie will most likely be moved up to young toddler two at daycare. In this room she will go outside and is surrounded by walkers requiring her to wear shoes. Since it has been awhile since I have put shoes on her I decided I might want to think about getting her used to wearing them a little bit at a time. It was a good thing. The minute I put them on her feet she lost it. Just trying to get them on to see if they fit was an ordeal. The shoes I ended up picking were adorable but completely against every thing I ever said I would do. I swore I would never spend more than a few dollars on a pair of shoes that she would grow out of in no time. That went out the door very quickly as I purchased her first pair of baby Puma's. It has been hard to find shoes so when I found a pair that she could not pull of with one pull I bought them. The good thing is she has room to grow in them. In case you are wondering it goes newborn than 1's. Newborns are too small and the majority of 1's are too big.

This was right after I put them on her. She was angry at me! This picture does not do her anger justice!

This is her very sad attempt to pull them off. She has noticed the Velcro and has started to pull at it. One day I will have a shoe thrown at my head from the back.

She finally gave in. After we got home she started screaming. The minute I took her shoes off she stopped crying, picked her shoes up, and threw them on the floor. I think the jury is still out on this things! The good thing...she thought they were quit tasty!

Yesterday morning we decided to try out story time for the first time. The entire 30 minutes is child centered. We sing, read books, and learn new signs to put to words. Kaylie loved people watching and actually sat and listened for a few minutes.

The things we do for our children. The best thing is that you do not realize how much you will enjoy it until you do it. I never thought I would be able to let go my insecurities to jump all around and act like a complete and total fool around people I don't know just to see my baby smile. It is an awesome feeling

I put this picture on because I think is show cases her shoes. Shoes change the look of a baby. I know that sounds stupid but I see her and think how much more grown up she looks. The other reason I put the picture up is in memory of the white bow. The white bow went MIA immediately following story time. We needed a moment to reflect back on all the good times and pictures we had with it.

This outfit is one of my new favorites. On the front it says "What does the pig say?" The reason I like it is because of the back. The first time I walked into her room while she was napping her baby booty was sticking up in t he air with the tail shooting straight up. It was hard not to bust out laughing. To get this picture I resorted to a BMM. My bad mommy moment was came when I realized I could not publish my post without a picture of what I had observed awhile back. knowing I would possibly be waking her up I decided the positives out weighed the negatives. In the end my instincts came true and I freaked her out so bad she would not go back to sleep until I rocked her to sleep. Oops!

Yesterday we went to see her pulmonologist. We have been once before but were not able to see this doctor due to the urgency of our visit. When we went in May we just needed to see someone. This visit went well. He confirmed that she does have chronic lung and because of this she will most likely qualify for RSV shots this next cold and flu season. Thank goodness!!!! The shots are 1700 a shot and insurance will only pay for one year if you do not have chronic lung. Even though I do not want her to have chronic lung I do want her to have the shots. The shots kept us from being in the hospital over Christmas.

After 45 minutes (which I couldn't believe he gave me that much time) of talking with him he told me his concerns. His concerns are the same as the GI doctors. He adjusted her meds, added some new meds, and sent us for a chest x-ray to get a baseline for future upper respiratory issues. Even though I am now very over whelmed by all of the information I have gotten in the past few days I would have to say this was a good appointment. At this point I feel like everyone is working together to figure out the puzzle that is Kaylie. All of her doctors specialize in pediatrics and actually know each other. It is always a good feeling when you mention one of them and the other says something good about them.

Please continue to pray that she will eat like the little piggy on her outfit.

Kaylie and Buster - June

As she becomes more mobile it is a lot harder to get her to sit still long enough to get a good picture. She was happy as long as she had something in her hands. If you want to see what she looked like with Buster the first time we started this you can go back to the March post. I have all of the pictures up to 10 months on it.

Good news/bad news

Good news:
This afternoon Kaylie's GI doctor called with the results from the biopsy. As expected everything came back normal.

Bad news:
We still have major feeding issues. In the past week we have pretty much cut out all solid foods in hopes that we would find the answer ourselves. Jason and I are concerned that she is having food allergies that could be causing her to choke and eat less. We figured by eliminating solids we could see if she started to drink more. This helped very little. After talking with him for a good 10 minutes we decided a few things.
1) We are going to put her on periactin. Periactin is an antihistamine that will be used as an appetite stimulant. It takes about 2 weeks to work. We are starting her on a medium dose so if we see that this is starting to work we will increase it even more. Once we give this some time to see if it works, we are going to look into the next part.
2) If the periactin works we are going to add feeding therapy in. This will be an intensive program designed to get children to eat. It is definitely more intensive than anything ECI would do. He wants to do this because he thinks part of what is going on is a learned behavior. Since she has struggled for so long with her feeding he thinks she may have figured out it hurts keeping her from eating.
3) After a few weeks we will go back in to check on her progress. If the above does not work we and she has not gained sufficient weight we will temporarily put in a feeding tube. This would only be for a few weeks to Right now one of his goals is to get her eating and to put weight on her. Babies should always gain and never lose. If they lose do to increased activity or illness they should be able to recover quickly. She should be gaining anywhere from 1/2 an oz. to 1 oz. a day. We are no where near that.
4) If all of that does not work then we will continue with the testing to see if we can figure out what else might be happening. He will do an MRI to see if she has a lesion on her brain that could cause difficulty with eating. This would also give us the opportunity to see if she has Cerebral Palsy or if she had a stroke at birth. This is something we have been watching for awhile due to the lack of movement on her left side. The good thing is if she does have Cerebral Palsy it is very mild. She now uses her left side like a champ and continues to move her left side more and more. I am definitely not as concerned about that as I used to be.

So to recap:
*Starting appetite stimulant - should work in about 2 weeks
*Taking her off solids for a few weeks and then reintroducing them after we have been on the medication for awhile
* Feeding therapy if above works
* Possibly feeding tube if she does not gain enough weight
* Possible MRI to check for lesions that may relate to feeding issues

Thanks for all your thoughts and prayers. We appreciate it!

HUGE Thank you!!!!

Jason and I wanted to thank our wonderful friends Blake and Jolie for watching Kaylie last night. They took on the task of not only having one baby under their roof for a night but two so Jason and I could have a night out to celebrate our anniversary. It was the first time for her to not be with us over night and having her with you made it so much easier. Thank you so much. We really needed the time away.

Kaylie's future husband in their sleeping bags. Actually they are pillow cases but it looks convincing...right?!?

Should I be scared that they are already flirting? Aren't they a little young?

Hands off my daughter! I will sick Bailey on you.

Clothes...A mom's best friend

Since we are running out of room in Kaylie's drawers I decided it was time to put some stuff away. I have been taking her clothes that she has grown out of and placing them neatly under her crib and now that it is full I had to take the next step. Believe it or not it was not easy to put all of her things into a box and seal it up. So many memories were wrapped up in each little piece of clothing both good and bad. Each one brought back and experience that helped us get to where we are today and for that I am grateful. The white outfit on top of the pink outfit was one of the first two outfits we put on her. This outfit was for a child that was up to five pounds. It was huge on her. Fortunately that did not matter to us because putting this outfit on her was one more milestone we had accomplished and we knew each step forward was a step closer to having her come home. God is amazing. Can you believe how big she is getting!

Other pictures from the past. You will see why it was hard to put these things away.

One of her first outfits.

One of mommy's favorite outfits. She did not like it as much as I did.

Her first dress

This outfit had wings on the back of it. We did a photo shoot with this outfit.

Her NICU calisthenics

107 days later outfit. This is what she came home in.

Results

The initial results from the upper endoscopy are good. We got to see pictures and their are no visible signs of disease. They took several biopsies from several areas of her GI tract and will hopefully find out the results to that early next week. If the results from that come back showing that she does in fact have the EE disorder we will sit down and figure out our plan of attack. If it comes back showing nothing we are going to have to go back to the drawing board and figure out what now. Our doctor told us the endoscopy was the first step and from there we have many other things that we can do. So for now we are in a holding pattern. We will get the results and then sometime next week go to his office for an appointment. Please keep saying your prayers. She has gained some weight since last week which is definitely a plus.

Tomorrow is the day

Tomorrow is the big day for Kaylie's endoscopy. Please pray that she will come out of the anestigia safely without any complications and that through this we will get some well needed answers. We will let you know as soon as we get the results. Thanks for all of your love and support. We truly appreciate it.


Here are some pictures I took of her yesterday. When she stood up with her hood on she looked like a pink tiger. It was adorable!

What a difference!

What a difference a year makes. Happy Father's Day baby!

June 17, 2007 - 2 lbs 8 oz

June 15, 2008 - 13 lbs 4 oz

Happy Father's Day

Happy Father's Day to my loving husband and even better daddy. We hope you enjoyed your day!

Kaylie decided to make sure daddy knew who the card was from. I personally think she was waiting for him to put it down so she could chew on it.

Kaylie was happy that daddy enjoyed his gifts. She was even more happy that he did not want to keep the gift bag.

Kaylie decided she was going to drive daddy to breakfast. The only problem was she couldn't figure out which key she needed to use.

After accepting the fact that she was not going to be able to drive, she kicked back and relaxed while mommy and daddy ate breakfast. She was so well behaved.

Since daddy did not get to play in the splash pool with us yesterday we decided to get back in and play today. Since this is daddy's favorite swimsuit we put it on especially for him. I had more fun playing today than I did yesterday. Since we didn't have the slide attached mommy moved the pool to a flat surface. This made the water a little deeper. The other thing was that we brought out some of her bath toys to play with. This pink sting ray is her favorite. As long as she had that she was happy.

Today she was definitely a little more adventurous. She crawled all over daddy and I trying to get from place to place. The only thing I was worried about was that she would face plant and hit her head. We figured she was done when she kept trying to crawl off the mat.

We finished off our day by surprising daddy with a nice dinner out at one of his favorite places. We took him to a Fogo de Chao. This place serves all the meat you could possibly imagine. By the time we left we were fat, full, and very happy. Overall, I think daddy had a great day.

Leisure Day Saturday Part 1

Since daddy was off wandering around in the woods avoiding heat stroke for the majority of the day, Kaylie and I decided to gallivant around town enjoying a beautiful Saturday afternoon. The first stop was joining Way Way and Claire for lunch at Chili's. The cool thing about this was that we have had a hard time getting together because every time we schedule something Kaylie gets sick. I joked that I was no longer going to plan anything with her because whenever we planned ahead, Kaylie came down with some knock down drag out illness. Both babies were so well behaved. Ms. Claire is teething causing her to chew on everything. Sorry Way Way. I jinxed you!

Kaylie became super fussy towards the end of lunch so I took her out of her seat and held her. The only things that made her happy were climbing across the table towards Claire to grab her paci and this. I am literally holding her as she stretches across the high chair to get the strap. Another table couldn't help but laugh at her. As long as she wasn't crying I did not care!

Our next stop was Babies R Us. Of course I went in for one thing. As usual I walked out with a lot more. It was one of those trips where you know that daddy is not going to be too happy with you. I walked out with yet another toy. Oops! This was her first "official" time in a grocery cart. The first time was quit disastrous so I don't talk about it =). It was one of those moments in time you try to erase =/. She looked absolutely adorable in her cart. She looked so tiny. Even though she was strapped in I was worried if I turned a corner too fast she would fall over and hit her head. Thank goodness she did great.

Towards the end of our BRU trip she was getting super cranky. What I didn't realize was that it was 2:30 which is way past her nap time. I ended up buying this toy and the bow in her hair. The toy made her very happy.

Leisure day Saturday Part 2

Once home I put Kaylie down for her nap. She slept for 2 hours. The second she made a peep I ran up and got her out of bed so we could play in the water. I had bought her this splash pool and couldn't wait to see her in it. At first she freaked out because I had the water too high. She doesn't like to have her face splashed. Once I turned it down and sat in it with her she relaxed and played. The best part of this was when she tried to drink the water. After the second time of choking she decided to stop for a little bit. Then she did it one last time. That was the time I was able to get the picture.

This is her new toy. Since she has had delays in the past with her motor skills I take every opportunity I can to find toys to help build her skills. This toy allows for her to play with a bunch off different things at a time. We can even buy some additional pieces to add to it. It is so cool and not so big that you walk in and feel like you have a major eye sore in your house. She enjoyed dancing to the music and eating the ball.

Finally, I couldn't resist this picture. She crawled over and used the door handles to pull herself up. She looks so cute.

*

We topped our day off by meeting daddy and his racing teammates for dinner. It was the first time for them to see Kaylie so I figured I would make daddy's day by going.

*

PS (from Kaylie to daddy)

Daddy, I am so proud of you for doing so good on your race. Thank you for coming home safely. I missed you. Oh yeah...I will not allow you to do a ten day race. =) It is too long to be away from me and I will miss you way too much! I love you so much. Love your little girl

Fun in the sun

Here are a few pictures from the last few days. The first 2 are from Mondays swimming class. This was our first class. The water was super cold that day but has slowly begun to warm up since it has not rained since Tuesday.


Kaylie, Kalie, Nicholas, and Jaxxon.

This is one of my four bathing suits. Do you think mommy went a little crazy? Oh well, I am only little once!

The next set of pictures are from today. We started our day off by going to stroller fit and then swimming. Kaylie is starting to enjoy herself. Today she actually started smiling and looking all over. She interacted more with others and bopped to music. She started dancing two days ago. It cracks me up. She even did it sitting on the side of the pool. At swimming she became somewhat irritated because I would not let her do what she wanted. She was so angry because I would not let her hang on the side of the pool and chew on the edge which is a type of tile. Do you thing she might be teething?!? For some reason this was the only way she was happy. She did enjoy getting out, sitting on the side, and then "jumping back in." The "jumping" part was really mommy putting her back in. Towards the end she actually turned to the side and reached out for the edge of the pool. It is awesome to see how comfortable she is becoming with the water.

Not only is it early for us but it is early for them. It was hard to get a smile from any of them.

A lot of times she kicks her foot up on the tray and relaxes while I jump all around her.

Post swimming picture. They all had so much fun today. The water has warmed up just enough to make it fun.

Is it just me or does she look like she is causing trouble. Her new thing is to dig through my purse and throw things out. Fabulous!