B+

My sweet boy had some (unexpected) blood work done. He was such a trooper and managed to bat his tear-filled eyes and crack a smile, when they were finished taking 2 vials of blood. It was heartbreaking, but I have to take a step back and prepare myself for what lies ahead. It will be much harder than watching him have blood drawn.

For some reason when the twins were born, they never took blood to test their blood type. I am not sure why, but now we know that Landon is B+. I am sure Gray is also, but I just can't justify putting him through that just for my own knowledge.

So, now I am off to call the Red Cross and find out who else locally we could plan his blood donation through. We have chosen to use a direct donor instead of the blood bank at the hospital. From what I have been told, our donors would donate within 2 weeks of surgery, and the blood would be over-nighted to Dallas. Then it would be ready on standby in the case he needed a transfusion during surgery. We hope that is not the case, and are taking every precaution to lessen the chance (Procrit), but 20% of Dr Fearon's patients still require one. (That is much lower than the national average with is almost 100%)!
So far we know that my dad and James' mom are both B+!!

Procrit

Right now our focus is getting insurance to cover the cost of Landon's Procrit injections. He will receive 3 shots, starting on June 10th, once a week until surgery. These injections will make Landon's little body produce more red blood cells.

Procrit is a man-made form of protein that helps your body produce red blood cells. Dr Fearon recommends that Landon receive these injections to increase his blood supply, so any blood loss during surgery, would be less detrimental. Our hope is that Landon will not require a blood transfusion, and this is one precaution that will reduce the chance of a transfusion.

Our insurance has just denied our second request for this shot. We are appealing once again and our praying for some coverage because this is a very expensive medicine.

Please pray, cross your fingers, rub a rabbits foot, whatever brings you luck, DO IT! ;)

Here is an article by Dr Fearon regarding the Procrit Injections.

http://www.ncbi.nlm.nih.gov/pubmed/12045535?dopt=Abstract

Technical Difficulties :(

We are having technical difficulties over here at the B house. I have a few things to update on Landon, so look for a post in the next next to two!!

We have a date!!!!

June 29th.

Much earlier than we had hoped, but this is when Dr Fearon feels the best time is to do his surgery. He will turn 10 months on June 27th. We were thinking his surgery would be mid to end July, so now we just have to get used to the idea. We will fly to Dallas on the 26th. Landon will have a full day of pre-op appointments on the 28th, and his surgery will be sometime on the 29th.

This is all so crazy.

Waiting on a date

Just wanted to post a quick update, because I have gotten some texts over the Easter weekend asking how we are doing. We are waiting for a call from Dallas tomorrow with Landon's surgery date. Dr Fearon has typed the Surgery Orders, and we will be looking at a date between the end of June to the end of July, so we have about 3 months of waiting......

After his orders are processed, they will contact our insurance. Please keep us in your prayers that our insurance will cover his surgery. Dr Fearon is out of network and out of state, but he is the best. We are very hopefully that we will not have to fight our insurance to get coverage.

I hope everyone had a wonderful Easter!

Dr Duke

Well, we visited with Dr Duke today.

The short story, he agrees Landon's lambdoid suture is fused. He even gave us some copies of images from his CT scan, and it is very easy for us to see that the plates are fused on his left side.

The long story....Dr Duke's PA came in (after we waited for over an hour) and asked us what our concerns were. SERIOUSLY? (Let me remind you we have left numerous messages for both the Dr and PA. We also had sent the radiology report and CD of images to them and were told they had been reviewed. So, I was just a little annoyed when we were greeted as if our child had a cold or something). She looked at his head for a few seconds (maybe 30), felt around, and said he would be in shortly. Another 15 minutes later Dr Duke came in. He started by saying his head shape was very consistent with the shape you would see with positional molding (what he originally said it was in Dec 09) and asked if he was rolling and in what position he was sleeping. I told him Landon has been on his belly for months and we did encourage it around 4 months because he himself told us that keeping him off that flat side would help him head improve. (Shhh...don't tell anyone I let my baby sleep on his belly).He said that he believed Landon's head shape was in fact due to positional molding. He gave us many reasons to support his claim, which I will not argue. Landon's left ear (the side that has the flatness from the fused suture) is slightly towards the front compared to his right ear. In Lambdoid Synostosis, the ear on the fused side would be pulled towards the back and slightly lower than the other ear. He also said that you would almost always find a large bump behind this same ear. Landon does not have the bump. Basically these are the reason's he concluded we were dealing positional molding. He said he will see literally thousands of cases of positional molding to every case of Lambdoid Synostosis. He has seen 3 cases of Lambdoid during his 20 years of practicing neurosurgery. Then he acknowledged the CT and said that it is the "tell all", and it does show that Landon's left Lambdoid suture is fused. He suggested that the fusion was a secondary, independent issue to the positioning molding. When I asked if he was suggesting that the suture fused since we saw him in December, he would not say yes or no. I asked him what month of Landon's life was he thinking the fusion happened, and he could not answer. In my gut, I think it has been fused since birth, and it was just missed. We might never know either way.

Dr Duke seemed to be pretty consistent as Dr Fearon with the ideas of surgery and timing. Dr Duke and Dr Fearon both will let us use private blood donors and feel there is a benefit to doing so. However, Dr Duke uses screw and wires that would stay in Landon's head, Dr Fearon uses only material that the body will absorb. We feel more comfortable with the later. The good news....they both agree the best time for surgery is between 8-12 months of age. So, thankfully, our misdiagnosis has not harmed Landon. His brain is growing and as of now it does not seem to be under pressure from his skull. Thank god!

We have an appointment with Dr Duke's plastic surgeon friend on April 15th. We are not sure if we want to meet this doctor knowing we are very confident with Dr Fearon and his team. I am keeping an open mind, and might keep the appointment as just another resource.

We did not really learn anything new today. But, we are happy with how the appointment went. We needed reassurance that he believed the suture was in fact closed so we could let go of the false hope that we were misdiagnosed again. If he could have stayed firm with his originally thoughts, we would be dealing with much more stress of finding a 3rd opinion and visiting who knows how many more doctors until we felt convinced of what we were dealing with.

I am so, so, so thankful for our wonderful pediatrician who doubted Dr Duke's diagnosis. Duke is a wonderful hospital with some of the best doctors in the world. Our ped did not have to question his diagnosis like he did, and we will forever be grateful. I want to do something to show our appreciation. We are not sure what would be appropriate. A card seems so small. Maybe a gift card, flowers, I have no clue. I would love some suggestions if you can think of anything. Please leave a comment to this post below and let me know if you have any ideas of a way we can show our gratitude to our wonderful doctor! Thanks!

Duke Appointment Today

We are headed to Duke today at 12:30. I am trying to be open minded, and see what the doctor has to say. This is the same doctor we saw in December, who said that his skull was not fused (based on a physical exam). He sent us away. He told us that his head would correct itself. He said he did not need to schedule a follow up. He said that he was sure. He was wrong.

Dr Duke (as I will call him) was given a copy of the radiology report on March 10th, stating that Landon's lambdoid sutre was fused. We also overnight him a copy of the CT scan images and left several voicemails for him and his PA. I was finally able to get his assistant on the phone about a week later, and she said he still felt the suture was NOT fused and saw no reason to bring us in any sooner than our scheduled appointment on March 30.

So here we are....almost 3 weeks later. I just want an explanation. I understand human error, and I understand this is a rare condition. However, I DO NOT understand why we were treated the way we were. I am very anxious to find out what he has to say.