Saturday, September 27, 2008

Addisyn with her Dr. from the NICU!!!

We went to Addisyn's Preemie Party today and it was so much fun! I just thought I would show you guy's the 3 pics I have of Addisyn with Dr. Lindenberg...The first pic is the day we brought her home...She was 11 days old. The second picture is of her when she was 4 months old and then of course the last picture is of her today at 11 months old!!! She has grown so much!!! 4 months old
11 months old

More Pics!!!

Hey Everyone! Sorry I have not been so good this time at keeping up with the after pisc of Addisyn and her Laser...This time it is taking a lot longer to go away and we are just now starting to see a difference everyday! It is taking longer this time because the Dr. turned up the energy on the Laser Machine so it went a little deeper...She looks great and is doing awesome! She has been off of the Phenobarbital for 6 days now and is really starting to hold herself up a lot better and for a much longer period of time! We are hoping that she is able to sit on her own by her Birthday! Can you guy's believe she is already going to be 1 next month! This past year has gone by so fast that I feel like I haven't really been able to enjoy every moment to the fullest! Anyway, I hope you enjoy the pics! We went to the Preemie Party at the NICU Addisyn was in and got to visit with her Neonatologist, play games and eat some good food!
7 days Post Op8 days Post Op...Brysen and Addisyn! So Cute!
Close up of Addisyn- 8 Days Post Op
John and Brysen on the train at the Preemie Party
Addisyn with Dr. Lindenberg(Neonatologist she had in the NICU)

Sunday, September 21, 2008

Addisyn's 2nd Laser Therapy!!!

Addisyn the night before her laser therapy...See her two teeth sticking out! Addisyn in recovery!
Addisyn the day we got home...
1 day post op
2 days post op!!!

Well...Addisyn had her 2nd of 4 Laser Treatments on Friday in San Francisco! She did really well once again...

John, Addisyn and I went to San Francisco the day before the surgery and stayed in the Ronald McDonald House while Brysen stayed with Dan Amma! Thursday was our 4 year Anniversary so since we weren't able to go out to dinner or anything we just walked around San Francisco and relaxed!

We arrived at UCSF at 6:30 am on Friday morning and were very excited to have this treatment done once again! Addisyn has an amazing doctor and we just love her! Her name is Dr. Frieden and we highly recommend her to anyone and everyone!

Once we arrived, we had to do all of the regular paperwork and do the Pre-Op Stuff...Dr. Frieden met us in the Pre-Op room and took a bunch of pictures of Addisyn's face and Scalp to keep track of her progress! Dr. Frieden agreed with me that it was a good thing she did not laser the top of her head so we could compare the lightening on her face to the top of her head! I think we all agree that the results were truly amazing after only 1 treatment.
Last time Dr. Frieden chose not to laser Addisyn's eyelids since it was her first time however this time she did both eyelids and a few spots in her left ear along with her whole face!
When we saw Addisyn, we were surprised that it didn't look as bad as last time although it is still pretty dramatic! Dr. Frieden explained to us that it was because it was a smaller target area this time since so much has already lightened. She also told us that she turned up the energy on the Laser Machine to get the best results!
Addisyn took almost an hour to wake up this time but it looked like all the other kid's were taking a lot longer than last time as well...Although I hate that we have to go through this, I am greatful that we are not the only one's! We saw and talked to a few other families that were there last time as well so that was comforting!
I will be taking pictures daily once again to show the progress of Addisyn's laser treatment!
Not to change the subject but tonight is the last time Addisyn will be taking Phenobarbital! We are super excited yet super scared at the same time! Please keep praying that she stays seizure free and doesn't have to be put back on that Yucky medicine! She is doing awesome and is showing signs of improvement in different area's each and every day!

Just a few cute pics of the kiddo's

Here are a few new pics of the kids! Enjoy!!!
Brysen deep in thought... Addisyn working very hard with Jayne!

Brysen and Addisyn with Jenelle (Addisyn's Physical Therapist) Addisyn in her new bow that I made her!
My Little Fishy!!!
Addisyn in pigtails for the first time! So Adorable!!!

Thursday, September 11, 2008

9/11/08- Update!

I finally have a moment to send out a small update, so here I go...

As you all know we have started weaning Addisyn off the Phenobarbital once again...Her Neurologist in Oakland wanted to wean her really slow and have her stop completely in the middle of October..

Well, John and I haven't been that happy with her current care so this past Tuesday I was very fortunate to get a second opinion with an awesome doctor in Sacramento..I was reffered to him by several people including my mom and the Dr. she works for.. After having a consulation with Dr. Asaikar I made the decision to transfer all of Addisyn's Neurology care to him. Dr. Asaikar is in his own office with only one other doctor which I also was introduced to and fell in love with him as well. I am so happy that when Addisyn is in the hospital again she will get to see her Dr. whereas at Oakland we never saw her Dr. once during her 4 day stay! That just did not settle well with us so this is great news.

Dr. Asaikar has 5 other Sturge Weber Patients with the oldest being 20 years old and getting ready to go to College and has a job...That patient also had the Brain surgery where they removed half of his brain. He gives us a tremendous amount of hope!

Addisyn and I will be traveling to Sacramento quite often for appointments with Dr. Asaikar as he wants to see her quite frequently. In our consulation he said that we are weaning Addisyn off the Phenobarbital to slowly and to speed up the process so next week will be here last week on that medication...We can't wait!!!
I almost forgot to mention that Addisyn had a follow up with her Opthomologist on Monday and her pressures are down to 14 and 17 in the Glaucoma eye! That is great...Before she ever had surgery her pressures were at 34 so that is obviously working however he still wants to do an exam under anesthesia on October 21st as he needs to take pictures and measurements.

Addisyn is still doing great with her ear tubes. We will be making our second trip to San Francisco next week on our Anniversary for another round of Laser Surgery....The time has flown by and I can't believe it is already next week...I will be sure to keep you all updated and be watching for many pictures to come!!!
Brysen is doing amazing and getting smarter everyday! He is super bossy and we have no idea where he get's it from! LOL... He is already telling us what he is asking Santa for and reminds us everyday that it is almost time to go to the Pumpkin Patch...
I hope everyone is doing well...Gotta run...The kiddos are both screaming at me for something!