Negative

Saturday, September 28, 2008
So we got some good news this week. On Tuesday, Brian and I received a visit from one of the Neurologists at Loma Linda. He told us that Kennedy's Team wanted to re-order the Luekodystrophy tests, however, he said that Kennedy did not have Luekodystrophy and there was no reason for the test to be re-ordered!!!! He said that he and couple colleagues reviewed her MRI and noted that the myelin (the white matter in the brain) was normal. However, he and the geneticist wanted to order a couple more tests because they thought that Kennedy might have a Congenital Disorder of Glycosylation Type 1A (CDG-1A). I do not know to much about this disease, because i don't want to look to much into it until it is confirmed via blood test. The most I know is that this disease affects most body systems especially the nervous system and liver function. I don't think it is terminal like Luekodystrophy, however, I don't think that this is a really good disease to possibly have either. According to the Neurologist if this test comes back negative he said that Kennedy most likely does not have a gentic disorder. The only thing wrong with her would be her underdevloped cerebullum. So we will keep on praying and hope that is all that is wrong with Kennedy.

Kennedy had her hearing test on Monday and she had to be referred because she failed her first test. So the very next day she had a more advanced hearing test which had a wider tone range. The tech told our nurse that she could hear, however, she does show signs of having hearing problems. She also had a vision test. The tech said she could see, however, she did not have great vision either. Kennedy's liver has also become enlarged. We were told that her liver could be blocked and that could be the reason for the bilirubin not being able to escape her body and for her continued yellow coloring. She had an ultrasound on Tuesday, I should get the results today.

On the positive side, Kennedy is doing great on her nippling. She is up to 56 cc's per feeding (which is 4 cc's from 2 ounces). Last night she nippled 47 cc's at her 8:00 pm feeding (the most she has ever taken from the bottle). When I spoke with her nurse this morning she told me that she nippled an entire feeding last night!!! This is such a good sign because this is one of the last big hurdles Kennedy needs to overcome in order to go home. Kennedy also got a big girl crib. This means she is able to regulate her own body temperature and no longer needs the beds with heat lamps. Things are going good. I am just so happy that she is making improvements and she is becoming stronger and stronger everyday. Brian and I were very patient and are so excited to be able to hold our baby whenever we want and for as long as we want. It is such a great reward.

(Above: Kennedy loves keeping her hands up by her face)

(Above: Peanut asleep with her Daddy)

(Above: Kennedy was not to thrilled about this family picture. She was mad that Daddy had to wake her up)

(Above: Daddy feeding Kennedy - she is such a good eater.)

(Above: "Get this tube out of my nose" Kennedy loves to grab and pull on her feeding tube)

(Above: She is so beautiful - she loves pink, can you tell?)

(Above: Kennedy's first bath in her bathtub. She didn't like it at first but then she really seemed to enjoy it once she was in the water for a few)

(Above: Grandpa and Kennedy)

(Above: Kennedy in her big girl crib with her new mobile)

Leaps and Bounds

Sunday, September 21, 2008

Today Kennedy had tons of visitors; Nana, Mimi, Grandma, Jen, Auntie Ashley, & David. She is a busy little girl. We finally got our very first "5 Generation" picture. Plus, Auntie got to hold her Kennedy for the first time - she claims that Kennedy likes to be held by her better then me, but I am not so sure about that!!!

(Above: Nana, Mimi, Grandma, Mommy, and Kennedy - 5 generations)

(Above: Auntie and Kennedy - together at last)

Kennedy is improving daily. She is now on nasal CPAP and all her sats are excellent. From what we are hearing from the nurses and doctors, they will be switching her over to nasal cannula tonight or tomorrow morning. If this is the case, she will be on the lowest level of oxygen support she could be on. Kennedy also got out one of her PICC lines and her arterial line in her foot. I am thinking they will be taking out the other PICC line soon since she is no longer on any intravenous medication. Her blood pressure medicine and anti-seizure medication are all being administered orally. She is also off all her TPN and Lipids. With all these lines gone I am finally able to dress her!!!! She can wear anything as long as it does not go over her head.

Kennedy is now on full feeds. She is currently up to 40 cc's every 3 hours. We are nippling her 15 cc's once a shift. According to the doctor we spoke to tonight, they might increase the amount she is nippling to every feeding. She has really mastered the sucking, breathing, and swallowing. She does not have any d-sats during nippling, which is such a positive sign that she will soon be able to nipple ALL her feedings.

I am so amazed by all her progress. We are still waiting for the tests regarding the Luekodystrophy. I am praying that these tests come back negative. It is so hard to stay level headed about everything. She is doing so well and excelling by leaps and bounds that I don't want to get over excited. I mean she still has a long road ahead of her, but it appears that she is letting nothing get in her way.

(Above: Kennedy and Grandma's first picture together)

(Above: Daddy and his little peanut)

(Above: Kennedy wants these tubes out - here she is trying to pull out her breathing and feeding tubes)

(Above: Taking time to stretch out)

(Above: I don't know what it is about this picture, but I love it!!)

Calling All Angels

Created By Derek Smith for his little Kennedy!!!!

Notice Anything Different????

Wednesday, September 17, 2008

(Above: check out my new look!!)

I HAVE BEEN EXTABATED!!!!! NO MORE BREATHING TUBE DOWN MY THROAT!!!!

So today my mom took me down to the hospital while Brian was at work. We got there at noon once visiting hours began. My mom got to meet one of my primaries today - Keisha. My mom and I were just admiring Kennedy. She is just looking better and better everyday. It is so hard to take your eyes off of her. Keisha broke the news to us that Dr. Abhraim was trying to wean Kennedy off of her ventilator - WHAT! Off her ventilator? Keisha said that if all goes well and Kennedy's gases come back good today they would be extabating Kennedy this afternoon. I think my mouth was at the ground at this point. I did not even know that this was an option or that the doctors were even thinking of extabation at this point. I was full of mixed emotions. I was so excited, nervous, and scared. I wanted that darn tube out of her mouth more then anyone could ever realize, but I didn't want them to take it out to soon and then have to re-intibate her.

However, Dr. Abhraim reminded me that we have to give Kennedy a chance. We need to give her a chance to prove everyone wrong....everyone that kept saying that she was not going to be able to ever get off her vent. I quickly ran out of the room to call Brian and tell him the good news. We were both on cloud nine. My mom and I left around 2:30 so I was able to get home before Brian got off of work. As soon as Brian walked in the door I was rushing him to get in the shower so we could get back to the hospital. I was trying not to get my hopes to high just in case they were unable to perform the extabation that day.

As soon as Brian and I walked in the door we saw our little girl laying there with no breathing tube! It was probably one of the best days I have had since she was born. She looked so good. I swear she had a look of relief on her face. I was so proud of my little peanut. She did it all on her own! Her hard work and determination paid off.

Greg came down that night to see his little niece. He was the first one besides Brian and I to see her new look. Greg brought us dinner and we sat and chatted during shift change. I was so antsy, I just wanted 8:00 to come around. We went back into Kennedy's room and began talking with her nurse Michelle. Before I could even ask, Michelle asked if we wanted to skip the bath and hold her right away - of course we did. It was just like I remembered it. She felt so good in my arms. I had her laying belly to belly. I think that is one of her favorite positions. She laid there and just stared at Brian and me.

I had the biggest smile on my face the entire day. I don't care what the outcome of all this is. All I know is that I have the most special little girl in world. She is not even able to talk and she has already taught me so much. I think she was put here in my life to make her presence heard.

1 down 2 to go

Tuesday, September 16, 2008

Kennedy has been doing so good. The doctors are trying to get a hand on her blood pressure, but other then that, she has been doing great. She has been really active and alert the last two days. She has been keeping her eyes open for hours at a time. She has also become aware of her breathing tube and is trying to pull and push it out. Whenever I see her get her hands on it - I freak out. The nurses have said that babies have extabated themselves. I surely don't want Kennedy to be performing any procedures on herself.

She is also moving around alot more. So much so that her Physical Therapist commented on her range of motion today. She is also getting more fidgety - she wants her mommy and daddy to get her out of bed. Hopefully her blood pressure gets a little more stable so that we are able to hold her again. I have gotten to hold her twice for 20 minutes so next time is Brian's turn (darn, I guess I will share). She is also becoming more expressive. Whereas before, whenever someone would do something to her that she didn't like she would just d-sat, however, now she is starting to frown, raising her eyebrows to give a dirty look, and even crys (no noise comes out but her face gets all red and wrinkled and her mouth is wide open). It is so nice to see her acting more like a "normal" baby!!!

After Brian and I gave Kennedy her bath and feed her dinner, the attendee stopped by to check on her blood pressure. Being me, I had to see if any tests came back and he informed Brian and I that they did get one test back that refuted the chance of her having Adrenoleukodystrophy!!! Wooo Hooo - we are able to rule one of the three test out!!! Brian and I are just staying positive and doing everything we can to comfort and be with our little peanut. She is such a strong willed little girl -I wonder where she got that from (Nana, Mimi, my Mom, and Me - HAHAHAHA)! Hopefully this week we will be able to get a picture of all five strong willed females in my family. For those who didn't know, Kennedy has a great great grandma, a great grandma, and a grandma all on one side. So if all goes well, I will post our first FIVE generation all girls family photo.

(Above: Kennedy sound asleep with her mommy washcloth. My primaries told me to sleep with a washcloth and bring it in so that Kennedy can smell me all day long)

(Above: Kennedy trying to get a grip on her breathing tube - I think she is over that thing down her throat)

(Above: Multi tasking at its finest. Dad is holding Kennedy's hand while posing for a picture. Mom is feeding Kennedy while taking the picture and Kennedy is trying to get one of us to put more breast milk in her syringe. She is up to 12cc's every 3 hours. They are increasing her feedings by 1cc every 6 hours)

(Above: "HI EVERYONE - thanks for praying for me")

The Best Godparents in the Whole World

Sunday, September 14, 2008
Derek and Jen (Kennedy's Godparents) came down to the hospital to see Kennedy. This was the first time they have seen Kennedy since she was transported to Loma Linda. They came down the day she was transported, but was too sick for any visitors. Jen and I went in to see Kennedy - her eyes were wide open. However, I found out that Jen has the magic touch. She started rubbing Kennedy's hand and arm and was able to put Kennedy to sleep. On top of that, Kennedy's blood pressure was at the lowest it had been all day!!! If Kennedy's blood pressure stays elevated I am going to have to get Jen to come down more often and soothe her.

Kennedy is so lucky to have Godparents like you. We know that you will love Kennedy no matter what the outcome is - disability or not. I count my blessings and thank the Lord to have you two in our lives.

We love you!!!

A Sad Departure

Sunday, September 14, 2008
As soon as Kennedy was transferred from Queen of the Valley to Loma Linda Brian's parents left Colorado and headed our way. They have been down for about two weeks. I was dreading the day they were going to leave. It was so nice to have someone at home to talk to or just sit and watch tv with. Plus, my mother-in-law was such a help around the house. Without her there I can't even imagine what shambles my house would be in. She did laundry, cleaning, watched our dog, cooked, shopped etc.....She was a lifesaver!! I am going to miss them. Before their long drive home, they met Brian and I at the hospital to say their goodbye's to Kennedy.