Galveston

For those of you that know Jason and I you know that we love to travel. Since February of 2007 we have not been able to travel and had become incredibly stir crazy. This summer we had the opportunity to join Jason's family for our first official trip as a new family. We took a healthy baby to Galveston to enjoy a week full of fun and excitement with her grandma, great grandma, great grandpa, and several other special family members and friends. It was wonderful to see how much they enjoyed being able to spend time with Kaylie doing exactly what Kaylie likes to do. We had a blast and felt so privileged to be able to take our finally healthy baby girl to explore the world that God has created for us. I hope that this is the first of many more family vacations to come.

Kaylie discovered she loves windows. Jennifer also discovered she likes windows. It made me smile as Kaylie laughed at her.

Jason's cousin Hillary. Kaylie really wanted her hat. Hopefully that means she is an Aggie and not a Longhorn.

Getting ready to go to the beach. I do not think she knows what she is in for!

Our first time as a family to go to the beach.

On this trip I realized how much a parent does for their child that is completely out of their own comfort zone giving me so much respect for our mom and dads. I personally hate the sand. It grosses me out when you realize it is every where. This trip, as Kaylie crawled all over me with her sandy hands, I realized I didn't care anymore because she was having fun. It didn't matter that I had sand in my hair and all down my suit because I love my child and would do anything to know she was loving her life. Thanks mom and dad.

To my mom...sorry about the Tilt O' Whirl!

Kaylie enjoyed eating the sand. She was ok with the water until we put her closer to the waves. She freaked when the first wave broke near hear. I do not think she liked the sound.

Clean up consisted of a baby and a hose. She looks happier here than she really was.

Since it is the middle of summer in Texas and the temps are close to if not in the 100's we decided to set up her pool under a tent on the porch of the house we were staying at so she could play. It was great. We did not have to worry about her getting burned and everyone was able to enjoy watching her play.

Kaylie got the biggest kick out of pulling everything out of the bag that is behind her. I have never seen her throw things so hard just so she could get to the next thing. I ended up leaving the bag their for her to play with. She was entertained for several days with this.

As you can see from the mess behind her she is proud of herself.

The pink sting ray and orange starfish are two of her favorite toys.

Galveston Part 2

She is destined to be a dentist when she grows up. She is obsessed with teeth.

She is also obsessed with taking the pacifier out of Jason's mouth.

Watching her problem solve how to take this hate of was rather funny.

On Wednesday we went to the Aquarium at Moody Gardens. I took some photos while we waited to go in.

This picture is our signature picture where Jason puts his arm out. The only problem is fitting a 3rd person in this. I personally think it turned out pretty well.

Jason and I were not really sure if she would pay any attention to the fish. We were pleasantly surprised to see how much she loved it. She was so excited to watch the seals swim by.

This is my favorite picture.

Grandma Chris

Great Grandma Jo

Great Papa

I think we wore her out.

Galveston Part 3

This hand puppet was an otter that grandma Chris gave Kaylie from Moody Gardens. She smiles every time she sees it.

Right before we went to the beach for the last time we were blessed to have Safelite come out and fix our windshield. On the way to Galveston we were very blessed to get there safely. While we were driving in downtown Houston something flew up from a truck in front of us and hit our windshield sending glass inside our car. Thank goodness my wonderfully talented husband did not even flinch. As the guy fixed the windshield he found the culprit. We were hit by a solid metal ball bearing that was about a 1/2 an inch in diameter. The guy told us people die from this. I thank God for getting us there safely!

Our last day at the beach.

She was able to relax the last day and seemed to do a lot better with the waves.

I know it is hard to see but we put her name in the sand.

The Macmurphys first family vacation.

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.