Gratitude

Generosity is paradoxical.  Those who give, receive back in turn.  By spending ourselves for other's well-being, we enhance our own.  This is not only a philosophical or religious teaching, it is a sociological fact. - Christian Smith, The Generosity Paradox

This hit home so much with me this weekend.  Our pastor preached on generosity and how you need to have a generous spirit of the heart in order to have generosity.  For the past two weeks, people have been beyond generous in our lives.  Without really even really reaching out and asking people have given funds to help support Makenzee's medical bills.  I can't begin to even describe the blessing that has filled our lives by people doing this.  A weight has been lifted off of Joe and my shoulders, that has been weighing us down for the last few months.  We were able to see the doctor in Seattle without having to count pennies to be able to go. 

While we were in Seattle the Doctor changed Makenzee's medicines around a bit to help with the increase in the reflux.  It has seemed to help as much as we can see in 2 days.  The doctor also told us she will help as much as she can over the phone so we can save the drives and money for when we really need to be seen.  These phone calls and visits could be often, as Makenzee is gaining weight we will have to adjust medicine to help with the maintenance of the disease. 

Joe and I have always thought there has to be an "umbrella" diagnosis that covers everything that is going on with Makenzee, our pediatrician agrees.  So last week we saw a geneticist doctor.  He is thinking with everything she has been through and how she is presenting right now that she has a connective tissue disorder of some sorts.  It will be a long road to figure out which one it is for sure but he did say that there is not much we can do for it anyways except for physical therapy and orthotics (which we are doing right now anyways).  So there is more testing and more blood work in our baby girls future but hopefully it will lead us to answers and give us a better path.  The Seattle GI doctor agreed a diagnosis of a connective tissue disorder is probably right when she looks at Makenzee's complaints of certain things.  This can affect the entire GI tract and we are seeing signs of little things that she is already having issues with at times.

So in response to all of you who have helped us out on the GoFundMe, or given us money, THANK YOU!!!!  Thank you isn't even a word big enough to show our gratitude for you generosity!!!!  I wish there was something even bigger that we could do or say than just that little word.  But please know that we are sincerely grateful and blessed to have each of you in our lives.  The money will be put towards therapy items Makenzee will be needing long term, insurance needs and all the trips back and forth to Seattle. 

Thank you!!!!

More and More it just keeps going

I have been so swamped with everything lately that I haven't had a chance to update about the going ons of Kenz.  Where do I even begin?!!!  The positive side is that she had an amazing July.  Stomach pain was low, and she was over all feeling better.  Then wham!!!!!  August hit and a flare hit her again.  We saw a new doctor in Seattle to see if they had a different recommendation than the doctor here in Portland that in June said Kenzee was a miracle and she would be totally fine since she had the NJ tube.  We knew that wasn't the case. 

We met with the Doctor at Seattle Children's hospital.  Wow she is was amazing.  She understood what we have been through, the ups and downs and the whole process.  She went over Kenzee's years of gastrointestinal doctors notes and reports and confirmed the diagnosis of gastroparesis.  She agreed that Kenzee needs to be followed closely and regularly.  We felt really comfortable with her and can't wait to get back and see her again.

Since that appointment there has been more and more nausea and vomiting spells.  This just tells us she is in a bigger flare and it is lasting longer than we want.  It seems she is coming out of the flare now.  She has put on four pounds in the last few weeks with some tweaks to the medicine by the doctor over the phone while we were waiting for insurance to approve more visits.  This coming Friday we go see the doctor in Seattle again.

The super bad and frustrating news.  After the initial appointment with the doctor in Seattle we requested more appointments for follow up visits.  Because the kids are on Oregon State Medicaid they denied the request.  We appealed that decision with letters of medical necessity from the GI doctor in Seattle.  Last week the insurance denied our appeal.   We are super upset and frustrated because we feel we can get the level of care she needs from Seattle's hospital and there hasn't been a hospital locally that can provide it.  I have called every peds GI office to see if they have a specialist locally they don't.  I have called adult GI offices to ask for recommendations and they have none in Oregon.  This is something we need to do and she needs.  So as of this moment we are cash paying to see the Seattle doctors.  We will be contacting an attorney and filing another appeal to have a hearing at this point. 

Since this has been announced that we are in this situation, there has been an overwhelming outpouring of love and support from our "village."  Joe and I have always said it takes more than the two of us to raise these kiddos and it takes a village.  Well our village has showed up in full support.  We have a GoFund Me campaign going right now to offset these costs.  There will be fundraisers along the way.  We are trying to fight the insurance and then also trying to figure out if we can afford to put her on Joe's insurance.  It is a big huge mess!!!! It's exhausting and tiring.  She is also going through genetic testing to see if there is an umbrella diagnosis that encompasses all of everything she is and has gone through.  She is a trooper and such a strong little girl!!!

Please keep us in your prayers and thoughts as we go forward!!!

Another obstacle...

I figured the best way to get the information out to a lot of people was to write another blog post.  This is not what I was expecting to have to continue but it looks as though this blog will be updated a lot more in the future.

Makenzee and the Gastroparesis ended up being anything but simple.  We went to her GI dr today to have a recheck.  In the last four months she has not grown at all and she has lost 3 pounds.  The medicine we started about a month or so ago hasn't helped her very much. We saw a dietitian a few weeks ago.  She suggested we track Makenzee's caloric intake for a few days to see where it was.  Makenzee is in-taking between 700 and 900 calories when she is supposed to have 1500 to 1700 a day.  We are at the point that we need to get her caloric in take up and it just really isn't possible.  We have tried and it ends up at that 900 calorie mark and she ends up with tummy aches.  With the dietary restrictions of gluten and dairy and now adding in low fat and no fiber, it is just making everything that much more complicated.  There are lists of things we have tried, I know we haven't tried everything but so many of them have failed.  The dr today told us that there are 3 medicines we can try for this.  Makenzee failed on the first, the second is where we are now and its barely touching it and the third is our last resort as treatment.  The third is black boxed and the side effects can be horrific.  We would like to stay as far away from that as possible.  So we are now at the point that the doctor is suggesting that we use an NG tube to deliver feeds during the night, hopefully making up 600 calories from her missing them during the day.  She will continue to eat during the day and this will be something added.  The hope is that this will give her body the boost it needs to continue to grow like she should.  This introduction of the NG tube will happen during a hospital admission over a few days.  We will also do a food challenge for the dairy while we are there, in the hopes that she can tolerate some sort of dairy because it contains a lot of calories in a small amount of food.

Joe and I are pretty lost and heart broken right now over this.  We appreciate each of you and the prayers and love for our family.  Please know we overwhelmed and upset by this news.  We never expected this to come so quickly.  If you reach out know that we appreciate it and we will get back to you when we can.  We are trying to process all this and help all 3 kids process this huge change in our lives.  Keep praying for a miracle and for our Turtle baby to have some sort of glimmer of hope because this just can't be her life.

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.

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.

so....

We came home from the hospital Friday afternoon.

This week we have our appointment to follow up on the seizures on Wednesday at 1:45. Then on Thursday we have the appointment with the nuero-surgeon. Hopefully by this point we will have more answers as to when and how they will do the surgery. That's all for now.

Thanks for loving and caring for our baby girl too.

CT scan update

Ok so the neurologist just came in. He said that the results of the scan are that the top plates in Kenzees head are fused together too early. So he will be referring us to neuro-surgeon. It sounds like they will be doing surgery to open the plates up. Because if they don't do this the head will elongate and put pressure on the brain.

Also today the OT came in and said that she is swallowing ok and just to watch it. They will follow up with us outpatient also to make sure things stay going well.

The dietician also came in to make sure she was eating well. The good new is she is putting on weight well. Since she was born she has put on 24 grams aday. Since she started the new formula she is putting on 74 grams aday. Chunky Baby!!! I love it!!! So they are happy about that.

I think that is all for now.

We are staying another night because the seizures haven't stopped as much as they want. So they are going to put an IV in her to give her the seizure medicine directly into her vein. Hopefully that will work so it's more direct to her.

Thanks for the prayers and good thoughts.

As of today

So since we have been in the hospital...MRI came back normal, 5 hour long EGG came back with misfiring in the left temporal lobe. So that means Kenzee is having seizure activity and minor seizures. The neurologist started Keppra to stop the seizures. They are going to request an Occupational Therapist to come in and watch her swallow since she isnt swallowing well when she eats. They are also ordering a CAT scan to look at the plates in her head to see if they are fusing together already.

Thank you for the prayers and wonerful thoughts.

Heres to catching you up

On July 12 Makenzee Jayne was born at 11:29 pm. She weighed 6 pounds 13 ounces. Everything was good!!!!



Within in a few days Kenzee strated getting crankier and crankier. She was screaming anytime she was awake. We went to our pediatrician and she said she had colic. Well the crying was all day and REALLY bad. So we went to the ER they did blood work up and sent us home and told us to check in with our dr the next day. We checked in with the dr at our office and he said she has GERD and started her on Zantac. He also wanted to try no milk proteins in mom's diet since I was nursing. Then on July 29th the hospital called us back and said some of the blood results came back questionable. So they admitted her to the hospital to watch her. By the end of the week things were looking better.

On August 10 they changed her medicine to prevacid. A couple days later they decided that the amount of issues she has been having leads them to believe she is allergic to moms breast milk so they took her off of it and put her on Nutrimagin and started adding rice cereal to help keep it all down.

On August 18 we finally saw a GI doctor because our pediatrician felt it was more than they could handle. She changed the formula to EleCare which is really expensive about $30 to $50 a can. Because of the reflux they want her staying at least a 30 degree angle all the time. She seems to be doing better now with this.

She also has developed possible seizures so the GI dr referred us to a neurologist. He ordered a MRI and an EEG. The MRI cause she has a knot on the back of her head that was of concern and the EEG for the tremors she is having.

Kenzee ended up having a few bigger tremors on Monday and Tuesday of this week which were or concern to the neurologist. So he admitted her into the hospital.