It's been too long since an update!!!

Mommy has been super busy getting everything just right for xmas that she has slipped on keeping up with the blog! But there is all sorts of good news to share! The neurologists have found an improvement in my brain patterns, which is what Daddy and Mommy were waiting to here for 3 months!!! The Metabolic team came to the conclusion that all of my blood tests are normal! So even using me as a research baby concludes that everything they tested for is fine!! So mommy and daddy are having the best Christmas ever and it hasn't even come yet!! I now officially weigh 7 pounds 1 oz, and I am eating like a horse!! I am almost sleeping through the night and I rolled over on my very own last night!!! So all sorts of good things are happening at our home this holiday season and we all hope you are having a magical time as well!! We will keep you updated with my progress!! Merry Christmas and Happy New Year!!! xoxo

My 1st Christmas Tree!!

Today was the most perfect day! It was 65 degrees in Denver and Daddy and Mommy took me to get my very first Christmas tree! We got a tree that is 8 feet tall and we decorated it all afternoon!! I can't stop staring at all the colorful lights that Daddy put on the tree! We are all still waiting for the results from the EEG test I had last Wednesday, so please keep saying your prayers. We will keep everyone updated as soon as we know anything.... Tomorrow is Tata's Birthday and I can't wait to celebrate!! So until we find anything out, thanks for following my progress!! xoxo

EEG Day!! I'm 77 Days Old today!

Wow, today was a doozy!! Mommy and Daddy had to keep me up all night so I would sleep through the whole test. The technician put gooey stuff all over my head and tons of little probes all over my head and chest so they could get an accurate read! Mommy and Daddy stayed right by my side, (and cried), but we made it through without anyone getting hurt. We don't have any results yet, it takes the Neurologists a couple of days to look over the EEG and Video and see if there was an increase in pattern. Let's all say a prayer that there has been change!! I have been eating so much more now, I have a bigger bottle and a bigger nipple so that means I am going to start growing even bigger!! So as soon as Mommy and Daddy get any information we will share the news with everyone!! xoxo

Kingsley's 1st Thanksgiving!!

So much has happened to me this week!! Mommy and Tata took me on my first trip to the mall! Mommy was getting all sorts of goodies for Thanksgiving since we had 10 people over to our house! It was sooooo much fun! I sat on Mommy's lap the whole dinner and her and auntie Skye kept trying to feed me sweet potatoes! I have gained some weight too, I am now 6 lbs 5oz. I also got to meet my other "aunt" Hope. She came in from LA to visit and I love her so much!! Daddy and Mommy also took me back to the mall just so I could sit on Santa's knee! I just asked Santa to pray for me because I have another EEG on December 3rd. So everyone who reads this please think of me on that day and take an extra minute for a small prayer! We are hoping to see more activity in my brain patterns! I am looking forward to Christmas, Mommy and Daddy are taking me to get a real Christmas tree! I will keep everyone informed as to what goes on next week!! xoxo

Finally another Update!!

Today is my 2month birthday!! Yay for me! I officially hit the 6 lb mark when they weighed me at my cardiologist appointment. Last week I had a neurology appt and everyone is so surprised and ecstatic by my progress!!! I am scheduled for another EEG (for my brain patterns) on Dec. 3rd, so please say a prayer! Today was cardiology and I have an innocent murmur which means its nothing to worry about! I do however have an Artial Septal Defect, which might be able to close on its own in time, but is fixable in the future if needed! So nothing too serious, which is great news. Especially because Mommy and Daddy were almost the ones with heart problems today due to all the stress they are going through! I really am a miracle baby. The Metabolic team had Mommy and Daddy sign a release form to let me be a research baby because we still don't really know what is going on. But I am eating way over my minimums and growing like a weed! Tomorrow I get all my vaccinations, so Daddy and Mommy are dosing me up with infant Tylenol so I won't be THAT upset or uncomfortable!! But thank you to everyone who reads my blog (Gail in Tucson and Tracey in Chicago) and everyone else!!! I will keep you updated soon!!! xoxo

Today was a very stressful day! I had a visit from Lisa, my Occupational therapist and got new splints for my hands! Then Daddy and Mommy took me back to Children's Hospital to meet Dr. Gallagher my metabolic doctor. They are using me as a research baby because they are not sure as to what is going on. So I had to do another blood draw which I really don't like at all!! But we eventually got through it and now I am home sleeping! I have an EEG next week so I will keep everyone informed on my progress! xoxo

Today is Election Day! My very first election, how exciting! I am doing great! Mommy and Daddy bought me a baby scale and I weigh 5 lbs 10 oz today! It won't be long before I hit 6 lbs! My physical therapist taught daddy and mommy how to do baby massage and boy it feels soooo good!! I am eating so much more then expected which is making mommy and daddy less stressed! I have a big day tomorrow (Wednesday, November 5th) because I have occupational therapy and then a metabolic appointment back at Children's Hospital where I might have to give more blood, but that's nothing compared to the 5 spinal taps I had in the past. As long as we are getting closer to answers, Mommy and Daddy are up for anything. I am told I am the best baby, I hardly cry and I am really cute! I would love to have visitors anytime, so if you are reading this blog, try to make a trip to Denver! Thanks for your support and I love all of you!! xoxo

UPDATE!!!

A lot has happened in my world this week! Let's start at the beginning! Monday was my first Physical Therapy appointment with Mary (who is soooo nice) and she taught my mommy and daddy how to do all sorts of stretches and ways to play with me. On Tuesday was my first Occupational therapy appointment with Lisa (who is super nice too) and she helps me with my hands and eating!! I got to go on an adventure to mama and papa's house for papa's birthday party where I got to meet my cousins Jaxon and Sailor for the first time!! That was super cool! I also went back to Children's Hospital today (10.30.08) to the orthopedic doctor and they took xrays of my feet. I am going to have to get surgery when I am little older and they figure out neurologically what is going on. I am too little now and without a diagnosis they don't want to give me anaesthesia. I weigh 5 lbs 7 oz!! My mommy dressed me up as a bronco player today but I think I am going to be a pumpkin for Halloween! I will post pics for sure!! Keep praying for me and my health! xoxo

I'm Home!

It's been two whole days and nights now at home and I LOVE it here!! Mommy and Daddy are up all night long feeding me (mommy watches me just to make sure I am breathing). I have been to the pediatrician already and Dr. Jen is awesome! I weigh 5 lbs 6oz and growing! Daddy and Mommy took my cast off last night (doctor's orders) and my foot is doing so much better! We get to go see the orthopedic doctors on Thursday, so I probably will get another one put on. I love my dog Rex, I open my eyes so wide whenever I see him! I had a visit from my relatives from New Mexico (Nonnie,Papa, Collette and Sherri) today which was fun! I am having the best time at home and I am doing so good! I will keep everyone posted on my progress throughout the week! xoxo

2 More Days Until HOME!!!

The results from my spinal tap came back negative today so that rules more tests out!!! That's such good news, which makes daddy and mommy happy!! I get to go home Wednesday around 11am! Mommy and Daddy are sooooo excited and nervous, but I am excited to see my house! I had a great day while Mommy and Daddy had meetings setting up special care for me when I get home. I am really going to miss all the nurses and doctors here at Children's Hospital because they have all been so great to our family and took the best care of me! I am going to have follow up doctors appointments for quite awhile and will keep everyone posted on my progress!! Keep me in your thoughts and prayers!! xoxo

Day 32 in NICU Oct.19th, 2008

Today was the best day so far! I no longer have my feeding tube in now, I am completely off of oxygen and my Nurse Anne let mommy carry me around all day without any leads (wires) that keep track of my vitals! I had a bath which is my absolute favorite thing in the whole world! Especially when mommy and daddy wash my hair! I loved seeing my grandmas this weekend too! They both came for a visit and showered me with love! I have to have more blood drawn on Monday for more tests that need to be done and that will be it for tests in the NICU! I am hoping and praying I get to go see my new house on Tuesday or Wednesday! I also get to finally meet my dog Rex! We will just be outpatients from that point on so Mommy and Daddy will take me to visit all the doctors and we don't have to stay in the hospital anymore!! I am moving around so much more on my own now and I really like to lift my head and look around at whats going on! Mama and Papa came to visit me today too which made my day, I love having visitors and I love to be held!! I will keep you posted on what day I get to go home! xoxo

Doing Well in NICU

Its been a very busy last few days, so mommy said she will update more pics from my one month bday tomorrow for everybody! We are all trying to work so hard on getting me home, we have put the blog on the back burner! Sorry!! So please stay tuned and check in on Sunday for more fun pics (including by bday cake) and all the health updates!! Thanks for the prayers and good energy!!

Day 28 in NICU, October 15th 2008

Today was another milestone for me! I am officially off my oxygen! I did so good eating and breathing at the same time that there is no need for those uncomfortable tubes in my nose. Now I am working on getting that feeding tube out of my nose too! Mommy and Daddy were by my side all day today holding me and loving me which feels so good. Mama and Papa came to give me love too!! At 4pm today nurse Mary and mommy took me down to get an ultrasound on my hips just to make sure my hips are in place and up to measurement, which they are measuring perfectly! I need to get some more blood drawn to give the doctors further analysis on some tests that came back with a low count. (Nothing to be too afraid of right now) Just taking precautions. But all in all today was a pretty mellow day which I love so I can grow and get ready to go home!

October 14th, 2008

Today was another good day for me! I am getting so good at eating out of my bottle, I can't wait to get that feeding tube out of me so I work extra hard! Dr. Dennis (my orthopetic doctor) took my cast off today and you should see how much better my foot already looks!! I am going to get another one put on Thursday just to keep up with the good progress. My nurse Mary took very good care of me my family today! We love our nurses at Children's! The doctors also put me on a lot of vitamins today which include folic acid and vitamin B6 which hopefully will increase my EEG patterns. I am going to have another EEG in about 5 days or so, so let's all pray that we see only good things!! I ate my whole feeding with Mommy this afternoon and my I took 53mls out of my bottle with my nurse Mary at 6pm! I also loved having Mama, Papa,Carly and Chad come visit me today! Thanks for keeping up with me and my progress!

October 13th, 2008

Today was a busy day for me! I had a whole team of doctors and nurses (Dr.Andy, Dr.Meredith and Nurse Stepahnie) doing my Fifth and hopefully last Spinal Tap. They were very good with me and told my mommy and daddy I did a really good job! More blood was drawn today about 8ml. So as you probably know I am SUPER tired. I have finally reached a milestone too! I am now officially 5lbs 1oz!! I am getting to be such a big boy! Daddy fed me 52ml from a bottle last night which is a record for me! Mommy and Daddy are hanging out with me at my bedside rubbing my head and massaging my back from all the needles and pinches I had today! Thanks to all of you that are following the Blog, and I will keep you updated with anything new that occurs!! xoxo

October 11, 2008

Today is a good day! Its cold and rainy outside and Mommy is Blogging about me while I sleep. I just got a cast put on my left foot to straighten out and add an arch to the bottom of my foot. I have been eating pretty good, but it is still something I need to work on! I weigh 4 lbs 15 oz! I am almost at 5 LBS! I love to sleep and I loved it when Mommy and Daddy came in to sing to me this morning! Here is a picture of my cast!