Brinton's Story....

Before Surgery:
I have been thinking a lot about Brinton lately and all he has been through in his short life. I wish I would've taken more pictures back then. I wish I would've written in my journal more often. In some ways I wish there would've been a blog where I could take note of each trial and each new success. I think back to where I was just 7 years ago...even 6 years ago and it feels like a whole other life. Many of you know all about our struggles with Brinton's health and many more of you do not. Since it's been on my mind so much this week I thought I would record my thoughts on this blog for future reference. I plan on making a blog book and I most certainly want this included.

I found out I was pregnant with Brinton in August of 2000. A few months later after an AlphaFetoProtein test (AFP) the results came back positive for Trisomy 21...down syndrome. As you can imagine I was distraught. How? Why? What? We had to wait 2 agonizing weeks for a Level 3 ultrasound and another week for the results of it. Needless to say that was a hellish month for us. However, after all was said and done it turned out that we had gotten a false positive on the test and our baby looked fine. We continued on with our pregnancy thanking the Lord that our baby was going to be fine. Towards the end of my pregnancy though my doctor had some concerns about the way Brinton was developing in utero and sent me for lots of tests. It was concluded that he was suffering from IUGR (intrauterine growth retardation) and this required me to have be monitored every other day at the hospital with non-stress tests and numerous ultrasounds. On April 30th, I was informed that Brinton was measuring roughly 4 lbs and he needed to stay in as long as he could for his lungs to develop. Two days later on May 2, 2001 I delivered my beautiful healthy 6 lb 14 oz. baby boy! What a wonderful blessing!!

When Brinton was 2 weeks old I noticed that he was a little chubbier on one side of his face than the other. I took him in to see the doctor just to check and I will never forget the nurses words when she told me "Maybe he is just a lopsided fat boy!" The Dr. advised that while it wasn't of immediate concern if it became hard then I should return.

July, 2001 While at a family reunion everyone was passing around the newest addition to our family, 2 month old Brinton. They all seemed to notice the chubbiness in his face and everyone had their opinion on what it was. By the next day his poor little neck had swelled up and we were off to an urgent care in Utah. They were unable to help us and sent us to the ER at Primary Childrens in a hurry. After several hours, an IV in his teeny hand, CT scans and an MRI we had our diagnosis CYSTIC HYGROMA. It's a congenital birth defect that causes a large mass made up of fluid filled sacs...and it was growing. They sent us home with copies of the scans and the name of a Dr. in Vegas that could help us.

The next several months was a blur of CT scans and MRIs, Dr. appoinments with a doctor who refused to help us until Brinton was "6 yrs old or 30 lbs", stares and the occasional rude comments from someone who did not know our situation. I felt like putting a sign around Brintons neck that said "Hi, I have a Lymphatic Malformation...ask my mom about it!" Finally, I couldn't take this disease lying down anymore. I looked all over the internet but information was scarce. I found a Dr. in Utah who would perform a procedure that consisted of injecting the cyst with pure alcohol in hopes of shrinking it..June 2002...this would be surgery #1.

Unfortunately, the procedure backfired and left the mass hard and did not shrink it like it was supposed to. On Sept 3, 2002 Brinton was admitted into Primary Childrens hospital for a 5 hour procedure where they removed the majority of the mass, including a salivary gland. At the time there was also a small mass in the middle of his tongue which they thought was a hemangioma that would shrink over time so they left it. Surgery #2 complete we were released 4 days later and went home .

On September 11, 2002 roughly one week after his surgery Brinton woke up from a nap bleeding from the surgery site. It looked like one of the stitches had come out so I took him to an Urgent Care, they sent me to an amazing ENT by the name of Vincent Nalbone who sent us to the hospital for emergency surgery. Turns out Brinton had 3 hematomas (blood clots) and they were life threatening. Surgery #3 required another 3 hour procedure to re-open the incision clean it all out again and suture it back up. He spent over a week in the Pediatric ICU under close watch from the Dr. My mother, my sister-in-law and I took turns staying with him as I was 6 months pregnant and still had a 2 year old at home. The hardest part was that we were not allowed to stay with him overnight at all.

It seemed we were out of the dark for awhile. Brinton seemed to make a wonderful recovery despite a small dependence to the morphine which caused awful tantrums and night terrors. He was delayed in his speech, he didn't say many words and those he did say were barely intelligible.

When he was just 3 we had him tested for the Early Childhood Special Ed program in our school district for his speech issues. I will never forget sitting next to him in a sound booth as he look straight ahead unable to hear anything the worker was saying to him. They tested his ears and both ear drums flat lined...my son was clinically deaf!! We went to our ENT who assumed that massive amount of fluid build up in his ears were the cause of this. We scheduled him for surgery #4, June 2004, placing tubes in his ears to drain the fluid and see if it would restore his hearing. Now remember that little mass on his tongue that they decided to leave? It wasn't going away as they had planned so the Dr. decided to do a little biopsy of while he was under anesthesia.

Tubes in place and biopsy done we returned a week later to find out that little inocuous mass on his tongue was actuall pre-cancerous tumor known as a squamous cell papilloma and it needed to be removed immediately. With that we scheduled surgery #5for August 2004, where they actually remove a piece of his tongue and suture it back up. Its very difficult and very risky because its possible to lose function of the tongue completly. Lucky for us everything went perfectly and after 3 days in the hospital he came home.

Since that time we have had several other surgeries including a tonsillectomy, adenoids taken out, another removal of a small hemangioma in his mouth and extensive dental work do to erosion of his teeth caused by the intial cystic hygroma procedure. He attended a special education preschool for two years and was able to overcome the speech issues. He still suffers from some hearing issues and ear sensitivity however half the time I think he is really just ignoring me..lol. :) He is a typical little 7 year old, bugging his sisters and doing sneaky little things but Brinton truly is a wonderful special little blessing in my life. He has taught me so much and continues to teach me.

I have no doubt that our Heavenly Father has great plans for our little boy. I think that his malformation was as much one of my earthly trials as it was his. My patience and my faith were tried so many times during his ordeal and there were often times I would breakdown and I could not see the light at the end of the tunnel. Fortunately, with the love of family, a wonderful ward, and the true gospel of Jesus Christ I was sustained and my testimony grew.

So this post turned out so much longer than I thought but if you got to this point congratulations, thank you for caring & being interested.