Surgery

Oh we have a surgery date. Drum roll please.......October 13 at 1030 in the morning. YA!!!!! it should only last no more than an hour the longest part will be getting the anesthesiologist to do his job. But I am so happy we will be surrounded by family!!!! Beckie (joe's sister) Al (joes dad) and Gena his wife are all coming in from out of state. And I know my sister Candis will be with us in spirit.

Keep praying we can feel it. It's the only way I am staying calm.

Scope or Cranial Tech

Ok so we are trying to decide between two companies. Scope (www.scop.net) is covered by our insurance. Cranial Tech is cash pay only. The problem here being that the plastic surgeon prefers Cranial Tech over Scope. He says that Scope kids' heads turn out ok. Cranial Tech kids' heads turn out looking good. So we researched between to two companies and so far we haven't found much of a difference. I have only found one person that knows Scope. They aren't too fond of it either. Alot of people in the field have never heard of Scope even though they have been around a lot longer than Cranial Tech. We are fighting with ourselves as to which way to go because it comes down to cash pay for Cranial Tech is $8,000 for two helmets which is what they are assuming she will need.

Does anyone have $8,000 laying around or information on Scope?

busy day at Childrens Hospital

Lets start off with yesterday Kenzee had her well baby check up. She is a little behind developmentally but nothing too concerning to the doctor. She has once or twice responded to her name. She has amazing muscle tone. She is (we are hoping) starting to smile responsively. She weighted 11 lbs 2 oz, and 22.5 in long!!!!! Ya for our big girl.


So today was a busy day....

It started this morning getting Kenzee's blood drawn. They tried again to do it in her little arms but once again her veins are too blown and weak to give them all the blood they need. So they took the blood again out of the vein in her head. So now I am done with them trying for her arm.

So the first appointment was GI. It was a recheck on her reflux. The doctor was very impressed at how well Kenzee was doing. I said she was still spitting up and vomitting. But the doctor said that is normal and the amount she is loosing isn't affecting her putting on weight. She wants us to follow up with her in 2 months.

Then we had her appointment with her Plastic Surgeon. Dr. Cohen seems to be an amazing doctor who has complete faith in this whole process. He agreed with Dr. Meltzer (the neuro surgeon) that Kenzee can have the endoscopic surgery. This is exactly what we wanted!!! YA!!!!! This is where they will put two "W" shaped cuts in the top of her head and go in and unfuse the plates. He said we should know in the next week or two when the surgery will be but he doesn't think it will be more than a month away. He stressed the fact that the surgery isn't going to fix the shape of her head rather it's the helmet or band that she will wear that will fix it. She will wear it for 3-6 months. There are two companies that work with this Doctor that do the band therapy. One is Scope the other is Cranio Tech. Scope is the one my insurance covers. Unfortuantly they aren't as good as Cranio Tech. My doctor and his nurse with out saying it said those helmets aren't as good. But if we go with Cranio Tech it's all cash pay. Each helmet costs somewhere around $3,000. She will more than likely need 2 total.

We are trying to plan fundraiser to help us raise the funds because for us if the other company isn't as good we don't want to chance it. I am going to be calling Cranio Tech to see about payment plans and options we have. I will keep you updated with the progress over the next few days and weeks.

Thank you for all the prayers and love!!!!

The week of Sept 5

So Kenzee started having more seizures on the 5th so we called the nuerologist on call and she said to take her into the ER because sometimes that can mean that she has an infection. So we did they ran a bunch of blood tests and gave her an IV of her Keppra. They even took blood out of a vein in her scalp. Well all the tests came back negative so we went home. They upped her medicine at home too. We folowed up with her pediatrician on Tuesday the 8th. She said all looked good in her department. Then we followed up with her nuerologist on the 10th. He said he is concerned about the leg twitching that she does. He doesn't think that is a seizure though. He wants us to get more blood tests and also a 24 hour EEG just to see what if anything her brain is doing during those leg twitches. He is assuming she is just a twitchy baby.


This week she has her 2 month well baby check up. On wednesday we also have a follow up GI appointment and an appointment with the plastic surgeon. I will update after all these appointments.

appointment with the surgeon

So we are for sure going to have surgery to fix Kenzees fused sagital sutures. We have to meet next with the plastic surgeon to make sure she is not too old to have the surgery endoscopically. This is the least evasive approach where they will put two holes in her head and cut apart the plates. Then for a few months after she will wear a helmet to help shape her head. The doctors have to reschedule their schedule and are going to fit Kenzee in by the end of october because the younger she is the better for the surgery. After the surgery she will need a blood tranfusion for the amount of blood she will use so Joe for sure and possibly Sue will be going down to donate for her.

Thank you for all your prayers and thoughts. Please keep them coming!!!!

Re check with the Nuerologist

Dr. Zimbric was pleased with how the medicine is working for her. We did up it on Sunday and since there has been a decrease in the amount of seizure activity. He said that we will keep her on the medicine for 8 to 10 months once she is seizure free. If this medicine seems to not be working eventually we will put her on a different medicine. When the 8 to 10 months is up we will do a recheck with an EEG to see if the lobe is still firing. I didn't know but the medicine doesn't stop the firing it stops the firing from turning into a seizure.