11/29/2010
Thanksgiving went good at our house. Boogie is doing good too! Not really anything to update on her. I finally get around to making a better guestbook tho. It is more of a chat than a guestbook, but it works. Fell free to check it our and write something in it Here
11/21/2010
Today is Brookelyns 2nd Birthday! I posted some pictures from Halloween, the benefits, and her birthday in the Pics section of the site.
11/8/2010
We have been lacking in the update department lately, we have been very busy. Brookelyn has recently seen a different nutritionist than we where seeing and we have changed the amount of calories in her formula to help her get back on the proper weight curve for her age and height. That seems to be going well. She has also been gaining a lot of movement in her arms and legs from therapy. She continues to get physical therapy, developmental therapy, and sees a hearing developmental therapist. We are working on getting a speech therapist to work on swallowing. Her stomach still does not digest, but being able to handle her own secretions would be very helpful to her. The only problem with starting speech therapy is she has a floppy epiglottis and the therapist we met with does not want to do ongoing therapy without another swallow study done. She is also scheduled to have her G-tube and J-tube changed out this Wednesday which should be an easy procedure. After that she doesn't have any more doctor appointments coming up for a while as long as things continue to go well. We are also very excited her 2nd birthday is coming up soon :) ,the 21st!!
10/7/2010
I would like to first off say "Thank You" to everyone who help make the breakfast a success! Especially St. Joseph Church for letting us have it there and The Knights of Columbus for cooking. We have been busy since our last update. We went to the dietitian and she increased her volume of her feeds to raise the amount of calories she gets a day. That wasn't working well tho because it made her reflux a little more so we changed the formulation to use the same volume just higher caloric concentration. She also got another set of immunization shots. Boogie and her sister also got flu shots. Brookelyn had an appointment with Dr.Schnitzler, her neurologist, also since last update. He really didn't have much too change. He did however diagnose her as having nystagmus, where in her case her eye twists and moves back and forth slightly. He only suggested we go to see the ophthalmologist.
9/10/2010
Sorry for the lack of updates recently we have been really busy. We had an appointment with her pediatrician last week and Boogie had to get two immunization shots. She then had some trouble breathing for a few days after the shots, but she is getting along a little better now. He also wanted us to talk to the dietitian too about maybe adding some extra supplements to he formula. The dietitian we normally had seen in the past is no longer with Loyola tho so we needed to make an appointment to go see a new one. That appointment is coming up on the 15th. Shortly after that the benefit is coming up! Hope to see you all there and I will try and post back after her doctor appointment. We should also be adding a bit more content to the site over the next few days hopefully. I added a outlined version of her story today. Feel free to check it out here. Or by navigating to the "Her Story" section of the site.
8/19/2010
First I'd like to thank all the people who helped make the Bridgeview pancake breakfast a success and I'd also like to thank all the people who came to eat the pancakes, we couldn't have done it without you either. Second, I had to take the guestbook down too because of the relentless assault of spam. I will try and make something a little spam resistant and put it back up. Last but not least I'd like to announce the flyer is posted for the Bradley pancake breakfast in the event section and right HERE
7/23/2010 - Pancake Breakfast
Information about the pancake breakfast is up finally on the events page. You can also check it out Here We have been really busy between Ashlyn's birthday last Saturday, Jamie getting her wisdom tooth out, and Ashlyn starting soccer this week so updates have been kinda slow but not too much been going on other than making some doctor appointments tho.
7/6/2010 - Surgery
The surgery went well. They were able to rewire back into the same spot. She slept the whole way home and is still doing well although we are all very tired because we needed to be at Loyola at 5:30 this morning. We hope this line lasts a lot longer than the first one.
6/30/2010 - Surgery next Tuesday...
No luck today... We went in at noon and they tried again and the clot is still in the line. They are unable to find where the clot is in the line so they are thinking that it is in the portion of the line that is inside of her. Because of that they don't want to be too aggressive with trying to push it, and if the medicine is not dissolving it, there is no other choice but to replace it. Surgery is going to be first thing on Tuesday. They are going to try to rewire the line first. When they rewire a line they place a small guide wire in through the catheter and then pull the old one out over it. Then they just slip the new one back on over the wire. She has had the rewiring process done before on the central lines she had during her first hospitalization. She also had a DVT in her left leg because one of the central lines she had. We are REALLY hoping for no more complications with this one.
After her appointment this morning we went to go see some of the doctors and nurses on the fourth floor, her home for the most part of 2009. It was the first time going back to visit since being released six months ago. It was also the first time we have ever visited the fourth floor on good terms. We also have pictures for the church directory tonight. Brookelyn's grandma Lori is going to come help get this task done.
6/29/2010 - Round two goes to the Hickman
Well round two goes to the Hickman after two hours of trying to push and pull TPA into the line. TPA is a medicine that is put into the line to break the clot down. It usually works pretty good. Boogies doctor told us that they have never had the TPA not work. Tomorrow we are meeting with an Oncology nurse who specializes in IV lines. We need to be at Loyola at noon and once again and we are hoping and praying that this works this time. I'm not sure what the next step is if this doesn't work, but I will post what we come up with back here after we get home.
6/28/2010 - Broken Hickman
This past Saturday night we noticed Brookelyn's new Hickman was not flushing or drawing back. Shortly after we noticed it had a crack in it. We placed a call to the doctor on Sunday and they called back Monday morning and we were on the way to the hospital to get it TPAed and have the end replaced because of the crack in it. We need to go back to the office in Homer Glen tomorrow afternoon to see if the medicine they used to try to dissolve the clot that is in the line. If that doesn't work we may need to replace the whole line. We will be praying that isn't the case, but we all know how Boogie likes to do everything the hardest way possible...
6/15/2010 - Home again
We are home again and the surgery went well. The Hickman went in good and the PICC line came right out! We are all very tired, but glad to be rid of the PICC line!
6/13/2010 - Surgery
We are getting ready to go to Loyola for Brookelyns surgery on Tuesday. Her surgery is to have her PICC line removed from her left arm and have a Hickman central line inserted into her chest. We will be leaving with Brookelyn tomorrow night to have a sleep over at Brookelyns aunt Melodys house because we need to be at the hospital at 5:30am Tuesday.
6/10/2010 - Site Launch
Bucks For Brookelyn site launched today.
