19...19...19...

As of yesterday, Ms. Kaylie was officially 19 lbs. Woo Hoo! Keep it up baby girl. We are so proud of how far you have come with your eating.

G-Button Update

During our appointment with the pulmunologist we discussed the G-Button. He told us that even though the pediatrician is pushing for it he is against it at this time. He wants us to meet with the endocrinologist first and depending on what they say we can revisit it at that time. His opinion is that he thinks it may be a growth deficiency. This is most likely related to the Russell Silver Syndrome. If she has a growth deficiency a G-button would be worthless. All it would do is make her fat and that is not what he wants to do. He does not feel she looks malnourished so he does not want to rush any decisions.

We trust his opinion more than any of our specialists. He is incredibly knowledgeable and has taken amazing care of Kaylie. He even took Kaylie on while she was in the hospital at Our Children's for the entire month when he didn't have to. He is definitely a blessing to have when we need to make important decisions.

Right now Jason and I are feeling good about holding off. Since she has been gaining weight the last few weeks we do not see the point in it either. If she stays in true form she will most likely plateau. This would be more proof of her having Russell Silver.

It has been awhile since Kaylie has seen her pediatrician. I would be curious to see if the changes in her weight changed his thoughts about it as well.

We see the endocrinologist at the end of the week. We will most likely not have any results from that until some tests are completed.

Pulmonologist appointment

Today we had our check up with Kaylie's pulmunologist. We go every two to three months and thankfully the last time we went he was able to see her in very sick. Because of this we have been adjusting many of her meds in an attempt to get her healthy, keep her healthy, and avoid the G-Button.

For the most part she has been sick all but 2 weeks since our last visit. Thankfully, it was the last two weeks which overlapped into our spring break =). It wasn't until yesterday we started to get sick again. I will take that!

A lot of why she is sick is due to her low immunity. When you watch your child stick her fingers in the dog's water bowl and then immediately put them in her mouth you can't help but know exactly why she is sick. She is a true toddler.

After talking with the doctor about how much she sleeps, her snoring, her constant runny nose, and the fact that she has tubes he asked if she had her tonsils and adenoids. Since she does he asked if we would want to do a sleep study. A sleep study would show if she is restricting air flow/having apnea's while she is sleeping. If she is we do not have a choice and have to take them out. If she is not then we will leave it up to our ENT to make the decision. Our pulmunologist feels that with all of her respiratory issues this is might be a solution to some of her issues.

None of what he discussed with us was a surprise. We have been waiting for someone to bring up both the sleep study and I had actually planned to ask the ENT when we saw him next what would cause us to look at her for tonsil/adenoid removal.

She will have her sleep study on Wednesday. Other than having to be there over night and having to hook Kaylie up to a bunch of wires it is nothing major. The benefit of doing this will provide us with a lot of needed information. The pulmunologist feels that with all of her colds and respiratory infections she is most likely not sleeping well and causing herself to burn more calories.

Words Any Parent Hates To Hear

No and Mine! These are two words that have become a part of Kaylie's vocabulary. The first time she said it Jason and I both looked at each other and wondered if she had truly said her first "mine." The funny thing is that it is hard to truly understand what she is saying until she has something she is not supposed to have and runs away yelling it over and over. At one point this afternoon she started crawling on the floor in a last ditch effort while continuing to repeat it. She continued by throwing herself flat on the ground clenching her hands so tightly and said it one more time before giving up in defeat. Between that and her new love for the word "no" we are in for it.

What did you say?

Kaylie's vocabulary and processing have increased significantly since we have started therapy. She continues to have difficulty with her oral motor but the more she is exposed and practices certain activities the more you hear a difference in her sounds. Here is an updated list of the things she says and does.

*mama for grandma
*papa for grandpa
*nonna...italian for grandma
*Says Bee Bee for Bailey
*iner for Shiner...she is getting close to saying the sh sound
*cuk cuk for cookie
*pees for please
*go...she will repeat this as she is racing across the room.
*car
*wa wa for water
*shoe
*mail
*no-doesn't use this in protest just yet...I know that is coming
*ba for bath - When you ask if she wants to take a bath she says ba over and over
* pa pa for paci

Things we say and what she does
*Us: "Kaylie... What did you do today?" Her: "I don't know." This statement is accompanied with her hands in the air.

*Us: "Kaylie...are you a big girl or a baby?" Her: "baby"Other things...

*We say "Ready...Set...Go..." When we start saying "Ready" she runs to a corner. On Go she runs while we say go over and over. She will run to another corner. And start over again. She can do this for ever. Now she repeats "go."

*When we ask Kaylie if she wants to help feed the dogs she will drop whatever she is doing, go over to the dog bowls, pick them both up, and carry them to the closet. She sets them down, waits for them to be filled up, and then takes Bailey's bowl back. If she drops any she stops and picks up every piece, one at a time.

Other things not related to speech...
*She can climb into Jason's BIG car by herself and then climb into her car seat.
*She can 1/2 way buckle herself into her high chair
*She can now climb onto our kitchen chairs
*She has figured out how to use anything as a step stool to get what she wants
*she now goes down the slide on her bottom
*She likes to get into chairs and slide out through a side hole
*She can spend 20 minutes getting on something, scooting off of it, and then go back to start all over again. Good way to tire her out!
*She is running really well
*She is finally giving hugs and her version of kisses. When you ask for a kiss she turns her head for you to kiss her.
*She attaches herself to your leg whenever you try to leave or walk by

Checking In

The past two weeks have been a lot of fun. With the exception of two days she has been somewhat healthy. Right now she is in the process of getting all four of her canine teeth and this has caused a major disturbance in our daily routines. This is the first time her teething has caused her to refuse to eat and entire day as well as run a fever. After this we are good until the 2 year molars. Woo Hoo!
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Last weekend Kaylie went to Chuck E Cheese for the first time. We were invited to Alex and Eric's birthday and had so much fun! Thanks for the invitation! She had a blast going down the slide over, and over, and over, and over again! Her other favorite thing was this big dog that you hit balls into its mouth. She laughed the entire time. As you can see by her picture with Chuck E' she wasn't too excited to meet him. When he came out to see the kids she went the other way. I tried to take her up to him and she threw herself on the floor. Maybe next time. I am going to take her reaction to Chuck E' and avoid the Easter Bunny this year in fear of waiting in line for the same reaction.
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This weekend we were blessed with a visit from Grandma Chris and Nonna (Italian for grandma). Nonna is my mom. Kaylie loved spending time with each of you.
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The last two pictures show her obsession with the dog bowls. She can not leave them alone. Whenever we ask her if she wants to feed the dogs she drops whatever she is doing, runs over to the bowls, picks them both up and goes over to the closet. Once they have food in them she takes Bailey's and attempts to take it back without dropping anything. So far we seem to be 50/50 in our success with that. The good thing is that whatever she drops she picks up.

Jinx

Kaylie has been on a pretty strong antibiotic in hopes of clearing up her 2 month long upper respiratory infection. A few days into it she actually got better. We were thrilled so we decided to take advantage of this and take her Easter pictures this weekend. All I can say is way to jinx myself. On Thursday the runny nose started and on Friday she was throwing up. Thankfully, the throwing up only lasted until noon but she has been sick the entire weekend. Saturday she slept until 4:30pm was awake long enough to go to Acute Kids and then slept until 8 am. Poor baby! All she did on Sunday was role around on the floor and whimper. I know every parent has to deal with this but my goodness...it hurts to watch and listen to her be miserable!

Today was much better. Jason stayed home with her and finally got her to eat some food and drink some milk. Woo Hoo. Definitely getting much better today!

Pictures: first pictures is the outfit she was in when I picked her up from daycare. She had run out of outfits and they found this in the lost and found. With her shoes on she looked adorable!

The second picture is an example of the day we had on Saturday. This is one of the several ways she would fall asleep on us.

Valentine's Day

Last week Kaylie was moved up to the 18 to 24 month room. It is crazy to think my baby girl is 21 months. Her 2nd birthday is right around the corner. On Valentine's Day her daycare had a party. I was dying to see her interacting with the others so I went. It cracks me up how small she is compared to the other kids. The good thing is she holds her own. She has finally started standing up for herself. If someone takes a toy she will take it right back. I am all for being tough!

The tables are really tall compared to her other room. This was one of the things that freaked me out about her moving up. They put her in the chair and she is able to slide out.

The pictures at the bottom are at home. I just thought they were adorable. She is obsessed with the newspapers.

Busted

The Macmurphy family is blessed with two dogs. Bailey is the youngest of the two and quit the trouble maker. She gets into every thing and eats anything she can gets her paws on. She is usually the guilty one in any given situation.

Shiner is our sweet and loving dog but tends to have some weird quirks for a dog. At times these quirks would be considered somewhat psychotic. Have you ever seen a 45 lb. dog flatten himself to fit under a bed during a storm? What about trying to fit in between the wall and the toilet because someone had the hiccups. During these psychotic moments he can try to dig through a couch (which he is not allowed on and never dares to get on unless he is have a moment) escape an incredibly secure crate (long story...ask me later), jump up on top of a desk, chair etc. or pace frantically until the threat of immediate danger is over. During these moments his eyes are glazed over, rapid banging on doors as well as the potential for loud pitch doggy screams may occur. You think I am joking...the pictures speak for themselves. He would not have done this otherwise. We think he freaked out over something the carpet people were doing. He was locked up in a room with the pack and play. We think he saw the mattress pad and decided he needed a new bed to keep him safe. All we can say is no bones for him for awhile.

Pictures

First things first. Have I mentioned how much I hate cold and flu season?!? I am ready for a sick free weekend. We have only had on sick free weekend since we came home from the hospital on December 9th. This weekend all three of us have pink eye and Kaylie and I are sick with upper respiratory infections. Fun weekend at the Macmurphys!

Our pictures from the Arboretum are finished. Here are a few of my favorites.

Pavlov's Theory

Pavlov's Theory and how it relates to Kaylie's life...every time we go to the doctor Kaylie starts crying when the nurse comes to get her.

Pavlov's Theory as it relates to my life...every time my phone rings at work I get a sick feeling in my stomach that it is daycare. I cross my fingers and pray it's an inside line.

Point to this...today the phone rang for me to pick little miss up because she had pink eye. Ugg! I can handle a lot but for some reason pink eye is one thing I dread! I think it is because it is something you can not really avoid. I saw the sign go up in her room at daycare about two weeks ago and knew her day was coming. I just didn't think it would be 2 weeks later. Poor thing is definitely not feeling well.

Today marks the 2 week point from when we were going to make our decision. She has gained a little but this little basically puts her slightly over her weight from when she left OCH. I do not take this weight too seriously because next week we could go in and she could be 17lbs. 9 oz. all over again. That has been our current trend.

For the most part Jason and I do not seem to be moving too quickly on this but this afternoon her pediatrician did express his concern. I think we will give it another week or so. We are probably just delaying the inevitable.

Today's weight: 18lbs 3.5oz.

Found...Finally

For Christmas Kaylie got me a new camera. I have love taking pictures and my old camera was possessed. It would turn on when it wanted, take pictures when it wanted, and then turn back off. Freaky!

My new camera is absolutely adorable and small. I took it to the Dallas Arboretum when we did our photo shoot and have not seen it since. I have been crushed with the thought of not having it. Yes, I was upset about having to buy a new one but I was more angry knowing I had lost the absolutely precious pictures of Kaylie and Fletch in their winter gear sporting their vanilla wafers and pink noses. Now that I have found it you can see the pictures.

For Christmas Kaylie was given a step stool to use in the bathroom. As of today it is still down stairs. This was for no reason other than to keep from cluttering the bathroom up when she is not ready to use it yet. Somehow the stool ended up by the window. Turns out she will climb on it to watch the dogs. She will sit and watch until the dogs are done. I decided to include all of these pictures so you could see the many phases of her watching. She only gets in trouble when she gets so excited she starts banging on the windows.

With the excitement of finding my camera I figured what better than to take some pictures. I love her so much!

Pictures

On Sunday we went to the Arboretum to take family pictures for the first time since Kaylie was born. We went with the Stall family so we could get a picture of the two love birds together. Jolie and I have said since Fletcher and Kaylie were born we needed pictures and we were finally able to get it when both kids were healthy. Jolie has a friend that takes pictures on the side so we decided to try. Right now they are all being edited but Shannon sent us a few of just our family. Even though Kaylie was not wanting to smile we were hopefully able to get a few good ones.

2 weeks notice

Since we were discharged from the hospital (December 9th) Kaylie has pretty much been sick the entire time with a few days break here and there. A week and a half ago we went and saw the pulmonologist while Kaylie was very sick. It was good timing because we have been dealing with this same type of cough for awhile and her medications did not seem to help. He decided to change up some of her meds in hopes of finding the solution. Kaylie finally cleared up on Friday of this week. Thank you. I pray it does not come back.

Since Kaylie has been out of the hospital we have struggled to maintain her weight. She continues to lose even when she takes in a good 1200 calories a day. During her 18/19 month well baby appt. her pediatrician brought up the word I have been dreading...the G-button. This would be a temporary feeding tube in her tummy that would help us feed her whenever we needed to. Once we no longer have a need for it we can remove it. Jason and I would still feed her 5 meals a day but on days when she is sick and doesn't eat we can supplement her with a night time feed. Jason and I have thought a lot about this. Three of our doctors were on board with this but the feeding therapists from Our Children's were very against it because to them it is a major step back. We understood their way of thinking but they did not listen to us long enough to hear that we were not abandoning the program and we were not doing this because she was not eating. The reason we would do this is because she continues to throw up and continues to lose weight. Their response..."Well its their child!" Thanks for the support.

After a lot of thought and a meeting with the surgeon we decided to do it. The procedure is supposed to be easy and recovery time is minimal. We just wanted to make sure it was the right thing to do. After another week of major weight lose we decided it was time. Our original date for surgery was this past Monday. It ended up having to be cancelled when Kaylie started with her major upper respiratory infection followed by a fever that lasted 2 nights. During this time is when we met with the pulmonologist. He talked us in to waiting until we got her healthy before we made the decision. He said he had not done everything he could do to make her healthy and he wanted us to let him have a chance to help her. He said let him get her healthy, weigh her, and then give it two weeks. He feels if she is healthy she will eat. Common sense! Considering we have an incredible amount of respect for this doctor we decided to adhere to his wishes. With the change in her breathing meds and the change in her antibiotic that we use for her immunity we are finally healthy. It took 7 weeks but we are there.

This past Friday we saw the GI doctor and she was weighed. Since her last appointment she has lost a good pound. The bad thing is that she was weighed an hour after eating and at 4pm so this is not the most accurate weight. Chances are she is 17lbs. 4 or 5 oz. Ouch!

Since she is healthy this will be the starting point. In the next two to three weeks we will weigh her and if she has not had significant weight gain we will go ahead with the procedure. I know it is surgery but I think it will be a huge relief off of all three of us. We saw how much energy she had while she was in the hospital. I would love to have that back.

Russell Silver Syndrome

Right after we got out of the hospital we went and saw a geneticist to see if their was a reason to why Kaylie wasn't able to gain weight. After a good hour and a half the doctor let us know that she thought she had Russell Silver Syndrome. Even though she does not have all of the symptoms she has a good 3/4ths of them. The downside to this is that you have to accept this through blind faith because you can not really test for it. Most of the time this test only comes back with 10% accuracy so you have to rule out what you know it is most likely not and then accept that this is the answer. The good thing is that she has a mild case.

The cause...the 7th chromosome. Somehow she either got two mommy genes or 2 daddy genes. Most likely this is why she was premature. Originally we thought it was me that caused her to struggle but it was the opposite. It is rare that it happens twice in a family so hopefully our next pregnancy will be uneventful.

Here is a link. Most of the kids you will see are severe. Their are a few that looked just like Kaylie when she was little. Now you could not tell because her hair covers up her fore head. When you look through this site make sure you scroll down and read the section titled:

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Characteristics Considered to Distinguish Russell-Silver syndrome Children From Other Small for Gestational Age Children

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and...

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Characteristics of Small for Gestational Age Patients in General That Are Seen More Often in Russell-Silver syndrome Patients

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She has many features in the first section but she has a good deal more in the second.

http://www.magicfoundation.org/www/docs/112.111/russell_silver_syndrome

In case you are wondering what all of this means here is a short summary...It will take a good amount of time to get some things worked out. It has been hard to figure out what is part of the syndrome and what is part of being a preemie. Things like the low immunity and chronic lung are from being a preemie. Things like her low muscle tone in her left side (for about 19 mths. we thought she had cerebral palsy), difficulty with feeds, digestion issues, delayed speech and many others are from the syndrome. Even though being diagnosed with a syndrome seems scary it is not. If this is what is going on we may finally have answers. In the end she will catch up with her growth to a certain degree by the age of six. Basically, the best part is that in the end she will just be short. It's not like I am the tallest one in the bunch!

I know it is weird but the first picture is of Kaylie at 7 mths/5mths corrected (duh) and the second picture is of another little girl that is on one of the sites. The picture of the little girl is the picture that made me realize Kaylie might truly have this. This child seems to have a mild case and has grown up to be a beautiful little girl. It helps you see the big picture.

Cheese

I realized today I had not taken any pictures of Kaylie this month so here you go. She actually posed for me.