I never thought....

Seven years ago when I wrote my last post here, I never thought that I would reopen this blog and have to write a post about Kenzee.  I didn't stay up on the blog through all her seizures and being seizure free now for almost 3 years nor her struggle through celiac or a dairy allergy!  I didn't write about the countless hours of food therapy, occupational therapy, physical therapy, speech therapy or orthopedics that she went through.  I didn't write on here about her not eating or talking until she was three years old.  I didn't write on here about her scare last year with I tense headaches and thinking she mat have craniosynostosis again. None of that seemed huge enough to make sure everyone had exactly the right specific story.  If you know and love Makenzee you know, she can walk into a room and win your heart over in about five minutes.  if you have had the pleasure of seeing Makenzee in her element you know how "Italian" she is with her attitude, her fiestiness and her loving and caring personality.  That's our Makenzee.

For some reason our little fighter is faced once again with a big medical issue. Makenzee has always battled GERD, celiac and constant tummy aches.  It isn't uncommon for her to have a stomach ache a few times a week.  Late August it all started getting worse, the stomach aches were more frequent and eventually just constant.  That is when we scheduled a doctor appointment with her GI doctor.  This doctor has always blammed her stomachaches on the GERD.This time mommy intuition knew it was something else. I left he doctor start her on antacid but pushed to schedule the endoscopy, just in case the new antacid didn't work.  It didn't work, it didn't change anything.  So the GI doctor wanted to change it prior to the endoscopy except she prescribed something Makenzee is knowingly allergic to.  In combination with this mistake and the endoscopy being at a hospital that has never been successful with anesthesia for Makenzee we decided to cancel the endoscopy.  But now where do we go and what do we do?

We knew we wanted her over at Dorenbechers Hospital, which is an amazing children's hospital attached to OHSU.  Kenzee got a pretty bad stomach ache the following week so I took her to the ER knowing that could help get her a "fast pass "to the GI clinic.  Sure enough it did. The wait was three months but we got her in within three weeks!

Makenzee was extra bad the week of her appointment, we think now she had the stomach flu also.  Makenzee and I told the new doctor her story and what has been going on.  The student in the room started to say what he thought was going on and the doctor interrupted him and said I think it's gastroparesis.  Gastro,what?  She said she wanted to keep Kenzee on the antacid we know has worked in the past, schedule her an endoscopy and start her on an antihistamine that has a side effect of making the stomach contract. The doctors hope is that the stomach isn't contracting and holding food due to a virus.  The endoscopy is scheduled for two weeks later but hoping that we would cancel because this medicine "reminded" the stomach how to work.

We had to go ahead with the endoscopy.  There was no improvement on the stomach aches. Makenzee didn't eat much dinner the night prior and had a small bowl of ice cream.That's it.  Total side note here! Joes daughter (not mine if you know me and my fear of needles) opted to have an IV instead of using the gas mask to go to sleep!  Weird kid!  So the doctor did the endoscopy and cameo to tell us Makenzee had a lot of food in her stomach after eating lightly the day before and being without for for almost 12 hours by this point.  She still had carrots in her stomach which she hadn't eaten for 3 to 5 days prior.  This sealed the deal, it is gastroparesis.  The doctor also saw inflammation which she took a biopsy of.

Gastroparesis  (GP) is where the stomach muscles are paralyzed and don't move to help move the food out of your stomach down into the intestinal track.  The doctor at that point instead of expecting great results in 2 weeks said to give it a total of a month on the new medicine and to wait for a week to get the biopsy results in hopes that the inflammation was the cause of the GP.  The biopsy came back with normal results.  This was a hard thing to swallow.  It was a double edged sword.  While we are glad there is no cancer or crazy severe things we wanted to know there was a cause for the GP and the biopsy didn't show anything.

We have now come to that month and had no improvement.  The doctor has now suggested changing the medicine to Erythromycin on a very low dose.  She also suggested getting Kenzee to a psychologist to give her some coping skills to dealing with the pain.  Now it's not looking like this will be a quick easy fix.  Joe and I have decided we are going to search for the cause of the GP.  This doesn't happen just because, there is a reason.  Many doctors have told us in the past there in normally something that encompasses this many different disorders that she has had to deal with in her life.  We know there is no gene mutations so we are on to different ideas and paths.  Hopefully something will lead us to an answer for Kenzee that fixes this paralysis, there is no way we even can fathom that this is going to be a lifelong battle for her.

Please keep sending prayers for our baby girl and our family.  We are really struggling with this diagnosis and lost on where to turn and what to do!  We are mad and pissed off that our baby girl has to go through more hell than she has already been through.  But once again she is a fighter and we know she will fight through this also.

Love you all!

BIG UPDATE

It's been awhile since I have updated this so I thought I would catch everyone up. Kenzee is doing great overall. Since her surgery she has been so much happier. At her 4 month check up she weighed 15 lbs. She is still developmentally behind but the doctors are positive she will catch up just fine. She has seen the neurologist who says she is doing well we aren't seeing him again until January. The GI doctor is still concerned that the Prevacid isn't getting rid of all the reflux so she has scheduled Kenzee a endoscopy to check her and make sure there is nothing else going on inside. That is scheduled for December 21st. She also wants us to see a cardiologist because at times around Kenzees lips will turn blue. It is very much a sign of reflux but just wants to cover everything and make sure it's nothing else. I think that is all for now.

Oh the car show....WAS A HUGE SUCCESS!!!! Thank you to everyone who came out to see and support. We raised enough money to start the Turtle Shell Foundation. We are going to use this foundation to help other people out with paying for their childrens medical bills. Thank you for all your support!!!

Catch up on the week

Wow this week has been crazy. Since the surgery Kenzee lets see. She was released the 14th from the hospital. On Thursday and Friday she slowed down eating all the way to 10 oz a day which is about a third of what she normally eats. But then on Saturday and Sunday Joe and I had the happiest little baby ever. She was in such a good mood. She was smiling and cooing at us it was amazing. Then Monday hit like a tornado. She started screaming bloody murder. We called the pediatrician and they said to call the neurosurgeon. The neurosurgeon said there should be no surgical reason why she is acting like this but they would see her Tuesday morning. They also requested that we see our peds office to make sure she didn't have something simple like an ear infection. Unfortuantly there wasn't anything simple. So we saw the neurosurgeon Tuesday morning, she said Kenzee look good surgery wise. So we let it go. By Wednesday she was so bad our peds office sent us to the Emergency room and she was admitted. She wasn't eating much at all. She was so dehydrated on Wednesday that she slept all day. The nurses could barely get an IV in, they had to place it in her scalp. That's a moms worst nightmare. She stayed until Friday when she was smiling and laughing again. They think she was so dehydrated and her reflux was so bad she was just refusing to eat. So now we are just watching her and are going to follow up with the GI and peds doctors this week.

day 2 in the hospital

We just met with the doctors. They are confortable sending Makenzee home today. They took off the bandage and there is some swelling still. The incisions are bigger than we thought they would be but over all she looks good. The only thing that is weird to us is how the "ski slope" in the back of her head is gone but the shape of her head has totally changed. One side of her head sticks out more in the back. But overall she is doing well. Thank you for your prayers and thoughts!!!

Surgery 10/13

Well today started with us having to be at the hospital at 6 am for checking. By 7:45 we had met with the surgeons and anesthesiologist. They took her back and they let me stay with her until she feel asleep. From there Joe and I waited for what seemed to be forever. About an hour and a half or so after the surgery started it was over. We met with the neurosurgeon and plastic surgeon,they said the surgery went well. The surgeon said that he opened up the plates and seperated them leaving a channel in the center of her head like a big long soft spot.

After that she went to recovery for what seemed like FOREVER before we could see her. Joe went back first to check her out and make sure she looked ok for me to go back. So for a couple hours she was in recovery.

Now she is upstairs in the Critical Care Unit. She has had a blood transfusion. She is on medication for the pain. She seems to be doing ok, she is crying a little bit out of pain we think but everyone is taking care of us well.

Thank you for your prayers and good thoughts!!!

Cranial Tech appt.

So we made the decision that we are going to go with Cranial Technlogies to do the band after Kenzee's surgery. We met with them this week to have oyur pre op appointment. They took pictures of her head and drew on them so we could see what the ideal head shape would look like. Alyssa talked about how we would have to come in once a week for them to shave some of the foam in the helmet to accomodate the growth of Kenzee's head.

I also found out that this company doesn't accept Medi-Cal which is the insurance Kenzee has. So we are cash pay with them but they do have a discount for Medi-Cal patients. So instead of being almost $4000 per helmet it will be about $2500. So here we come fundraising!!!!

A friend of mine is making a website so soon you will be able to go there and see pictures, keep updated on the fundraising and follow the blog there.

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.