I don't say it much, but I am thankful!

James was born with a birth defect. He was born with a Lymphatic Malformation; a condition that affects 1 in 4000 live births. Lymphatic malformations are rare non-malignant masses consisting of fluid-filled channels or spaces thought to be caused by the abnormal development of the lymphatic system. Often described as a sponge-like collection of abnormal growths that contain clear fluid. Macrocystic malformations are large, soft, smooth clear masses under normal or bluish skin. Microcystic malformations present as small, raised lesions containing clear fluid. Superficial (visible) lesions may present as tiny clear bubbles that sometimes become dark red due to bleeding. There is no known cause for this condition and it is not genetic. We found out our child had this condition at our 28 week ultrasound. 
James was a lucky one as he has had amazing treatment and outcome from that treatment. Many children born with LM live with tracheotomy, feeding tubes, and ongoing treatments.
I am part of a FB group Lymphatic Malformation Awareness Group and am reminded every day how lucky we are. James is thriving and happy. There was a time each day was filled with questions of survival, treatment plans, and fear. I am very thankful for the health of my family! 
Here are some previous posts on this journey:
Blog posts on LM

Left out the MRI results

There was just too much to write in the last post and life is buss. Sorry this amazing news is late!
James was born with a lymphatic malformation previously called a cystic hygroma. He was part of a study for OK432 over the summer. James had another MRI a couple weeks ago.
We drove to Houston yesterday to see Dr. Edmonds for a follow up. We got the most amazing news...after 6 years(they found the mass during a sonogram while I was 28 weeks pregnant) of learning about Lymphatic malformations and 10 ENT's(with varying treatmant plans) James MRI shows NO sign of the mass!!! He had the OK432 injections twice this summer.
We were gearing up for a very dangerous surgery for the last 5 years...thankfully we found Dr. Bauer in Dallas who referred us to Dr. Edmonds last year. I cannot say enough about Dr. Edmonds. He is so caring and kind! We are thankful that we found him and learned surgery is not the only option and other sclerosing agents can have issues. James would have likely had paralysis and a huge scar...and now he is all better!
Dr. Edmonds says that he has not seen a recurrance in any child who has responed this well to treatment! We will go once a year for many years to come for a follow up MRI and results, but feel so good about the prognosis!
James definately has his smile back!
You can read more in previous posts on my blog.

Update on James

Have I mentioned how well James is healing! His jawline is so defined now...I am continuelly amazed by this sweet little boy! There is no sign at all of the mass that stormed into my life at 28 weeks gestation.
We were in the car the other day and James was talking about going to Galveston with my soon the be nephew, Cade~:)~
James stopped and said: We had to go there because I had to have surgery.
Cade: You had surgery?
James: Yes
Cade: Why did you have to have surgery?
James: I had a Malformation.

Simple as that. "I had a Malformation."
Sweet boy...if only you knew how long a road this has been! You did so great! We are proud of all you went through and most of it was just second nature to you!

WE are so Thankful to have found Dr. Edmonds!

Bandaids

James scratched himself today. It was a small scratch but her really felt he needed a bandaid and since we have them right now(they are hard to come by in my home:(), he was adamant.
Often bandaids are used up within days of the box arriving so I am hesitant to start the bandaid brigade until there is a lot of blood. There wasn't, but I gave in.
James found them and opened one all by himself. He proudly announced "look, Mama. I put it on by myself."
Gavin: "I need a bandaid"
Mommy: "Gavin, we only use bandaids when we have an injury"
Gavin: "I do have an injury on my finger but you can't see it"
James: Gavin, you don't need a bandaid because that is not an injury!"
Gavin:"Yes, I do have an injury"
James : "No, Gavin"
Mommy: "James, just let him have one bandaid"
Gavin happily got the bandaid and had me hlep apply it.
James: "You only get one bandaid"
James is very focussed on rules, especially if they apply to Gavin.
About 2 minutes later, Gavin says: My finger doesn't feel hurted that much"
James: "It doesn't take that quick for the hurting to heal, Gavin!"


James neck looks great, btw! His swelling is completely gone. Just need to schedule the MRI to get the all clear{{fingers and toes are crossed}}

Differerences

James is old enough to understand that he looks different right now. Last night he was brushing his teeth and I noticed him looking at himself in the mirror. His right neck is very swollen and he looks very disfigured on that side. His sweet chiselled jaw line is no longer there.
Today we went to the grocery store and I must admit I was concerned that people would notice his differences. I am most concerned that he will notice someone noticing. Nothing like that happened, it was business as usual.
When we got home we were unloading groceries and I was making dinner.
James: "Mom why do I have to have this big place on my neck"
Me: " The medicine they put in to heal the pocket makes it swell. There is an infection so your body will heal it up"
James: "what's an infection"
Me: "it means you have an illness in your neck"
James: " I wish I didn't have to have a place"
Mommy" "It's because you are a very special boy. When you were born your neck was swollen and I knew you were special the minute I saw you. Then it went away and it will go away again"
James(starting to cry): "But my smile is different when I have this"
Me: "your smile is always the same to me, James"

I am crying now, but I did not as I said it. I hope his smile can be the same to him again very soon!

The Dr. said the swelling should start to go down after 10-14 days. The fever, swelling, and pain are WNL but still so unpleasant to see him go through. Jim and I are praying every minute that this was truly the best choice!

Sad:(

I am beyond exhausted. This week has been very tiring, but last night put me over the edge. I did not sleep for even 5 minutes.
James has been in some pain, but mostly if the spot ws touched. Yesterday his neck got really swollen and it was very painful. He couldn't even give hugs without crying and when Daddy tried to kiss his neck, he cried for 5 minutes. It is heartbreaking!
Last night his neck swelled up more and is about the size of a baseball. He cried all night long even on tylenol and then motrin. They are calling in Tylenol with codeine. He cannot get calm enough to fall asleep so I know it really hurts.
I feel so sad. He was perfectly healthy and his mass was hard to see for most people. I am questioning my decision to do this and also really reliving the emotions I had when he was so difigured as a baby.

Life as we know it

The surgery went great. Tiny little incisions so just the surgitape.
James did great but had a little scare in recovery while stil under. His airway was compromised and they had to prop rolled blankets under him to get his position right. After that he did really well. Swelling and tenderness as expected, but no fever yet. We were at Children's in Houston and they were fantastic! They kept us overnight for observation to make sure the swelling wasn't going to cause more breathing issues, but were able to get out Wednesday and just got back home Wed night. The Dr. said day 3 is usually the worst.We go back in 2 weeks for folllow up, blood work, and another EKG then 4 weeks later for the next procedure.
Things are pretty much back to normal, today(day 3). James has tenderness but can play and eat and sleep as usual. The hospital was great but still pretty scary for him. He was so sad that he could not go home and a little groggy from anesthesia so extra emotional. He just kept saying "I want to go back to the hotel" and tearing up.

James treatment

At 28 weeks pregnant while getting a routine US, a mass was discovered on our sweet baby James' neck. It measured 4cmx4cm and was thought to be a fluid filled mass. WE were uncertain of what the outcome would be at that point and saw specialists, had an MRI fo James through my belly, and had weekly US until delivery. I cried and prayed every day in hopes that he would be able to eat and breathe at birth, wishing that there was no mass! I really rarely think about how terrified I was today, but this week I've been remembering.
At birth the mass was very evident and disfiguring. James was beautiful. I remember feeling very protective and sad, but he was so perfect. I just wanted everyone else to see the perfect boy I saw. I prayed and touched him. I massaged the spot and rubbed my hands together and layed them on his neck to use "energy". Whatever worked was my motto!! I remember going to the store and a well meaning lady saying "oh, what happened to him", she probably thought something bit him or he was having an allergic reaction:( It was so hard for me to say, he was born with a mass...and watch her face as she realized this was a birth defect, not a horrible reaction. I felt bad for her, but also angry that my sweet baby didn't look perfect to her. Not angry at her, just at the world in general.
Miraculously at around 1 month the mass seemed to be shrinking. It really looked smaller to our family. I know, in retrosepct, James was just growing. As James grew the mass stayed the same size and seemed to move inward. It became less detectable(looking back at picture it is still very much there, but it looked so much smaller than when his whole right side was hugely swollen at birth) and today is hard to see unless you know he has it. I can see it clearly and feel it and continue to wish it would just go away, but I know that is unlikely. I also know through MRI's that it has not shrunk, it is just the same size that my sweet tiny boy was born with and now he is much bigger.
We've spent the last 5 years trying to find the right Dr. A Dr who would be our partner, really explain our options, and treat James kindly. Dr. Bauer was perfect for us. We found him and loved him and this is one of his specialties! We hoped he could be the Dr to help us, but he referred us to Dr. Edmonds in Houston.

We made the trip to Houston today for our 1 hour appt w/ Dr. Edmonds. (He is doing the study on lymphatic malformations and OK432 that we hoped James could qualify for instead of the very scary surgery that would likely impact his trigeminal nerve). Good news~he qualifies because his mass is macrocystic rather than microcystic for the most part and we feel good about the Dr. and his explanation of the treatment. We also feel really good we did not do surgery because it is so risky and according to Dr. Edmonds you almost always end up with some damage to the facial nerve.
Bad news~we'll be spending alot of time in Houston. The treatment will most likely take 2-3 procedures and we'll spend 1-2 nights in the hospital the first trip. If all goes well we may not have to stay overnight the second and any subsequent visits.
The procedures causes swelling and infection so James will have a fever for about a week after each procedure. He will likely have irritation(pain:() in his neck where the mass is during this time because the bacteria will cause an infection to hopefully cause the body to block and shrink the mass. We are hopefull that these will be the only side effects.
We have to treat the mass because chances of severe swelling and or infection that requires emergent care are likely without treatment. We want to take care of him before school starts so now is the best time. Treatments should start next month.