Adalyn is in REMISSION 1-17-13
Adalyn went to the eye doctor on September 21st for a routine exam. It was told to Theresa that she had tumor in her right retina. On the 24th, Tim and Theresa were told the devastating news that their 9 month old has Retinoblastoma, a rare pediatric eye cancer. Follow along as Adalyn takes on Childhood Cancer and beats it!
Adalyn was born on Saturday December 3, 2011 and she was perfect! When she was a day old in the hospital, Theresa had noticed that her left side of her body would tremor. She pointed it out to the nurse and all she got was..."oh she looks perfect to me, she is just trying to get used to being outside the womb."
For those of you who know Theresa well knows that she wasn't going to just settle for that.
When Adalyn was 3 weeks old she started having issues with eating, she was always gagging and choking when she would eat and she would look like she was drowning. She was brought into Children's for a swallow study and was told she was aspirating into her lungs so she would need to be on thickened milk. No problem, Tim and Theresa could handle that!
At 5 weeks old she was hospitalized in the PICU (Pediatric Intensive Care Unit) for a week with RSV. She was having periods of APNEA so that is why she went to the ICU. During that time she had a strange episode of arching her back, getting stiff as a board and turning her head in a weird position all while making a high pitched cry that Tim or Theresa had never heard before. Theresa told the nurse that she couldn't bend Adalyn and that something was wrong so a doctor came in and looked at Adalyn and said..."Oh that is reflux, she can't handle eating right now so we will give her an NG Tube later to get her to eat" So that begins the journey of the WRONG DIAGNOSIS.
At about 13 weeks old, Tim and Theresa noticed that Adalyn just didn't act like normal "babies" should. She wasn't laughing, rolling over, grabbing at toys, playing with her hands/feet, and sitting still. She was always moving, she couldn't control her body, her head was always bobbing and she was STIFF and RIGID. When you held her she would keep her back arched like a seal. There was no way of manipulating her body to look any other way. She also became very inconsolable, it was like she was forming colic when babies normally start growing out of it.
In the beginning of April 2012, Theresa called Gillette Childrens and asked to have Adalyn seen by a neurologist because she was suspecting Infantile Spasms. Adalyn was immediately seen the next day and had a 4 hour Video EEG completed. Luckily, there were no seizure activity seen on the EEG but it also wasn't quite normal. She also failed her neurological exam, she was keeping relexes that newborns have that she should have outgrown and she was not getting reflexes that 4 month olds should have. She also has increased tone in her extremities and deep reflexes. She is very stiff and arches her back. She keeps her left arm in weird positions (remember the side that was tremoring, see, Theresa knew something from day 1!) She was scheduled to have an MRI on April 24th.
April 21st...Adalyn wasn't eating very well and had a fever. This isn't anything new to Tim and Theresa but knowing that she had her MRI on Tuesday and would be sedated for it, Theresa took her into Children's to see if she had a cold/ear infection/ect. The doctor came in and told Theresa that Adalyn would need to stay overnight because she was "clinically dehydrated" and also was a "Failure to Thrive" She had went from the 75th percentile to the 40th percentile in 1 month. Well the overnight stay became a 10 day hospital stay. During which, Adalyn had seen every specialist known. The MRI did happen and her brain looked normal, they said that they still cannot tell us if it "works" though. Only time will tell us that.
They believe that Adalyn has Cerebral Palsy. She is a medical mystery though to the Neurologists at Gillette since she can flucuate her tone from low to high. She doesn't lose her tone while she is asleep which means Cerebral Palsy because it doesn't go away with sleep. She also has low tone in her mouth which is what is causing her not to want to eat. She had a G-Tube surgically placed on April 27th. That will stay in until she no longer needs it for 3 straight months (that includes medications)
We have a LONG road ahead of us. We ask that you please keep Adalyn in your prayers, along with Tim, Theresa, Hannah and Benjamin. We are "FINDING ADALYN" we are learning "who" Adalyn is and "how" Adalyn will be. Either way, this "IS" Adalyn, it makes Adalyn, Adalyn!
Wow it has been awhile!
13 hours agoI cannot believe that I haven't posted anything on here since Halloween! That is crazy! Guess it is a good thing though right.
Things have been hectic here that is for sure. Adalyn is doing well, we have had 2 ER visits since I posted last for fevers since she still has her port but nothing has come of them. They believe each time was just viral so Praise the Lord on that.
I started a new job the beginning of this month. I am no longer working with the Marine Corps which was a hard transition but instead I am working as an Enrollement Counselor at Capella University. So far I love it! It is a really nice change and I get to talk to people all day, which we all know I am great at talking!
Adalyn turned 2 on December 3rd! I had every intention of making a post on that day but time got away from me so here is her Happy Birthday message: Happy 2nd Birthday Baby Girl! You are so brave and strong. Mommy and Daddy are so happy to have been chosen to be your parents. We love you!
Tomorrow is going to be a very stressful and tiring day in our house. Adalyn has her routine scans tomorrow morning. Tim will be taking her first to the eye doctor, where they will do another vision screen to make sure that patching is helping. From there she will go to the OR for her EUA. They are going to access her port like normal but when she is under they are going to try and place an IV. If you remember she is a very HARD stick and everytime they access a vein and try and flush it, it blows. If they can get it on the first time then they will go ahead plan on getting her port removed when she has scans again, probably February time frame. I cannot believe that it has been 10 months since she had her last chemo and 11 months since we heard the words...the tumor is dead! Praise God!
I am not able to be with Adalyn tomorrow since I am taking Mr. Ben Ben to Children's Hospital where he will be having a dual hernia repair! He has a left inguinal and an umbilical hernia. So, hopefully it won't be a too painful of a procedure for him.
Poor Hannah, there always seems to be something going on with her siblings and then she is just there hanging out! She is doing amazing in school though, I just love listening to her read. Adalyn loves it too and there is nothing more heart warming then walking into the living room and seeing them both sitting in the recliner and having Hannah read her a book. She loves her baby sister and Adalyn adores her big sis!
I hope you all are ready for the Holidays! Merry Chirstmas to you and your loved ones this year from all of us!
May 2014 be a HELL of a lot better than 2012 and 2013!
Theresa and family
Guestbook signed 0 times today
We cherish your messages. Take a moment to write a note in our guestbook or read entries from other visitors.
Adalyn's CaringBridge site is made possible through donations. You can make a donation to CaringBridge.