12/23/2011
Brookelyn had her third birthday!! She had a good party! She is also looking forward to Christmas!!! I will post some Halloween, Birthday, and Christmas pictures after Christmas and before New Years hopefully. We have finally gotten to talk with the neurologist and we raised her Keppra and it seems to have helped a little, but she is still having a lot of minor breakthrough seizures. We also went to the Brookfield Zoo for the Christmas lights. We will post some pictures of that when we post the Christmas pictures.
10/30/2011
Brookelyn got her new wheel chair! She sits in it very good. It is a better fit for her than the loaner chair was. She had also had a neurologist appointment we went to where we told him that she has been having slightly more minor seizure activity. He ordered an EEG. We had the EEG done, but are still waiting to hear back from the doctor. We talked to his nurse and she said that the EEG was slow and showed sharp waves which points to seizure activity. We need to wait talk to the doctor to decide the course of action though. On a more fun note we carved pumpkins :). Brookelyn is going to be a smurf for Halloween!
Boogie's Dora pumpkin
Ashlyn's Jack pumpkin
8/9/2011
It has been a while since we have posted any updates, but we have been very busy. Her visit to the neuro surgeon went well. They really didn't have anything to add, just keep doing what we are doing. Her visit to the general surgeon to change her tubes went good too. Believe it or not it is time to make another appointment to get them changed again. She also needs to see the neurologist again soon. She has been doing a lot more arching and minor seizure like activity. We are thinking that it is due to her finally gaining weight and growing out of some of her seizure medicines. She has also continued to gain weight! We are not able to have the nutritionist come anymore though, because early intervention decided that nutrition is more medical than developmental and that was the end of that. Boogie had also been to the dentist for the first time since the last update! They said her teeth where good, but her tooth development was about 2 years behind. She had also seen the eye doctor for the first time since leaving the hospital. She was diagnosed as legally blind, but only functionally blind. That means she can still see, but she can see high contrast better than low contrast. She has severe cortical vision impairment. She is still waiting for her wheel chair too, but in the mean time we had the house measured for a ramp! I think that's it for now, but hope to be finishing up some things on the site, adding some more photo albums, and more frequent updates.
6/10/2011
Bucks4Brookelyn.com is 1 year old today!
4/22/2011
Brookelyn has been doing well! She gained over a pound in the last month. She was 22 pounds for the last 18 months. This was very exciting!! She has also been doing very well with sitting in her chair! She got fitted for her new wheelchair the other day. She had visited her neurologist recently too. He didn't change anything. She is also scheduled to go see the pediatrician for immunization shots, neuro surgeon for a check up, and general surgeon to change out her G & J Tubes. She also has some meetings so we can decide what we are going to do after Early Intervention quits at age three.
3/30/2011
2 years ago today was the day our Brookelyn got sick... :( She has come a long way from where she was and we hope to continue to see her progress! We would like to thank everyone who has help us along the road to recovery
2/26/2011
Brookelyn had seen her pediatrician last Friday. Everything went well, we picked out a new formula for her. It is going to be Peptamin Jr.. We are currently trying to find some sort of program to help pay for it or talk the insurance company into paying for it because it is going to be $700 a month. Other than that we heard back from her GI doctor and the biopsies came back negative and we have an appointment to go see him March 15. She is also getting a lot of teeth in :)
2/17/2011
Brookelyn had the nutritionist come today. She gained 10oz and grew a half an inch! That was good because she didn't gain any weight the month before. She also grew length wise more than was expected. She was expected to grow 1/4in and she grew a half inch for the second month in a row. She goes to the pediatrician tomorrow to get a 2yr checkup and get one of her immunization shots that she missed while in the hospital. We will also pick out a new formula more fit for her age to switch her too.
2/11/2011
Brookelyn had gotten an endoscopy Tuesday morning as planned. It went well. They said everything looked good, except for a small inflamed area around the esophagus. The inflammation was probably a result of her vomiting/dry heaving episodes she has been having more than a cause. They also took a small tissue biopsy from inside her stomach to check for any bacteria that could be causing the issue. If the biopsy comes back fine the Neurologist, G.I., and General Surgery team will need to sit down and come up with a change in medicine or a new medicine that can be added to her already large medicine list.
1/19/2011
Brookelyn's surgery went good and she has been doing wonderful the past week. She had her upper GI done on Monday. We haven't talked to her GI doctor yet about the results, but the doctor in the GI lab that did the test said it looked normal. If it is normal her GI doctor wanted to look with the scope and make sure everything looks the way it should. If it does then GI, general surgery, and neurology needs to sit down and discuss some changes that they can make to her medicine and try and get her vomiting under control. She had also recently seen her dietitian recently. Boogie grew a half inch last month, but her weight stayed the same. We are talking about changing her formula to a more age appropriate formula as well. That will increase the calories per oz. so she should be able to gain a little more weight easily.
1/11/2011
Christmas and New Years went good. Our Brookelyn is starting the new year off with trouble tho. Her Hickman got clotted on Friday night and we went to go see the doctor yesterday and we decided to try just removing the line and using an oral medicine instead of replacing it again. We went and saw her GI doctor yesterday too. He suggested that we get an upper GI to figure out why she has been vomiting soo much lately. The plan was to get that done at the same time as removing the Hickman, but after we got to the hospital today they told us that we need to come back to have it done as an outpatient procedure.
