Saturday, March 29, 2008
O'Ma and O'Pa came to see me in the hospital! Yeah!!
Friday, March 28, 2008
We got some other good news. One of the original tests that was done when I was born came back positive for a genetic disorder called "Long Chain Fatty Acid Disorder", which would result in my body not being able to break down fatty foods and would mean that I could not go a long period of time without eating. It could also mean that I would have to be hospitalized if I was ever too sick to eat. However, the doctor said it is commonly a false positive. They had to do a second round of tests and send them back east for genetic and DNA testing to double check the work. Our doctor called yesterday and told us that one of the tests is back and it came back negative!!! We are still waiting for results from all the places my blood was sent to, but this is very good news! Hopefully we will get more good news next week when I go to Doernbecher for the VCUG to check out my kidneys and bladder.
Thanks again to everyone for their well wishes and prayers!
Tuesday, March 25, 2008
I won't be going up to Doernbecher until next Wednesday afternoon. The test itself will take only about an hour, but we will have to wait a few days for the results. Between Thursday and the Doernbecher appointment I will have to continue taking antibiotics twice every day orally and then until further notice.
That's all for now....at this point no news is good news. The doctor did stop by today to say that the tests they did on my blood, urine and spinal fluid continued to come back negative and they are not worried about those any more (and haven't been for a while).
Thank you to everyone for their continued thoughts, prayers and well wishes.....they mean A LOT to my Mommy and Daddy (and Grammys, Grandpas, etc.)!!! We appreciate all the love and support we have received these first 2 weeks (YEAH! I am two weeks old tomorrow!).
Monday, March 24, 2008
Saturday, March 22, 2008
The doctors have said I need to be in the hospital for 10 days of treatment with antibiotics, which means I will be in the hospital until March 27 at least. Once I am discharged I will then need to go to Doernbecher Children's Hospital to have a VCUG. The doctors will place a catheter in me and pump dye into my bladder. Then with a big, fancy scanner they will look to see how the dye flows to check the severity of the problem.
We don't know what the long-term prognosis is, but it could be as small as needing continual antibiotics for the next few years until I grow into my ureters (the place where urine flows between the kidney and the bladder) since they are a bit over sized right now. I may need surgery down the road to correct the problem, but lets hope not!!
Mom and dad have been great....especially mommy! She has spent EVERY night at the hospital with me (dad spent the first 4 nights there with me too) and barely gets out. She makes sure I eat every 3 hours and then has to do stuff to get ready for the next feeding. Dad changes a lot of diapers, feeds me my bottle supplement of formula, holds me, reads me the paper and talks to me about sports. I really like spending this time with them, but I can't wait to be home. The nurses here have been great and they fight to see who gets to take care of me when their shift starts. They have been very nice to mom and dad as well! I have also had some very nice visitors as Grammy Pat has spent a ton of time with me and Grandpa Randy has come by as well. I got to meet my Aunt Dian and cousing Katie as well. My parents' friends Shawna and John also stopped by to see me and bring lunch; mom's friend from work, Joy, also stopped by one night and brought Thai food.
Thank you to everyone who has been thinking about us, praying for us and sending good thoughts and vibes our way! Even though mom and dad can't reply to everyone, they want everyone to know that every text, voicemail and email is VERY MUCH appreciated and have helped them cope with seeing me in the hospital. They continually tell me how blessed we are as a family.....and I agree.
Sunday, March 16, 2008
I can't wait to see more visitors! Check in with my parents and set up some time to come see me! If you are lucky I might have a diaper waiting for you!
Saturday, March 15, 2008
This first pic of me is after Daddy changed my first diaper at home. I took it pretty easy on him with the first one, but don't worry...I will be increasing the degree of difficulty from here on out.
This next picture is of my mommy, daddy and me when we first got home. Mom and I were pretty tired and dad was very proud! We have been enjoying getting to know one another! I have also really loved the company we have seen at home so far! Grammy Pat and Great Aunt Kris have been staying here and helping out and they have been great! Grandpa Ike and Grandma Linda stopped by for a short visit the first day back too. And Grandpa Randy stayed all day Saturday and we spent some quality time together. He and daddy made sure to teach me about basketball as we watched our first basketball game together. I can't wait to see more people!
In the mean time, I hope you come back from time to time to check out the latest on everything I have been up to and checking my progress. Mommy and Daddy will make sure to post some pictures and interpret my coos, ga-ga's and other baby talk as I have yet to learn how to exactly use my hands in order to work the computer.
I hope that you enjoy my new blog and that I get to see you real soon! I am so happy to be here and I know Mommy and Daddy appreciate everyone's love and support!