Best Mayo Trip so Far!

We will be coming home on Sat! It was a very productive and positive visit, confirming why we sacrifice and come here.  The newer doctors who haven't been around for her entire journey, remarked at how loved she is, and that some of the other doctors would relay her story in the care conferences with pure amazement and love.  I am beyond grateful for the care she has received here over the years. One particular doctor, who works in another specialty now, went out of her way to come see us.  I wish I had taken a picture of her with Cloey,  because she really went above and beyond when Cloey was struggling the most. Lainey was a newborn at the time and she would help me,  push the stroller, carry Cloey's machines and hold the baby all in addition to providing excellent care for Cloey. She treated Cloey like a person, like a whole person, The way medicine should be practiced.  I made sure to tell her how grateful I am, because we may never be back, and Cloey is still asking why I made Shelly cry and why I was crying! It was a very touching moment. We have literally been busy the whole two weeks, I brought things to do in case she had a major surgery or something and I had a lot of down time.  That was certainly not the case! I didn't do any of it, we didn't do any of Cloey's school work either, but we got all the important things done and then some.  Listing everything we did would be long and pretty boring, so instead I am just going to give you the exciting results of our marathon 2 weeks! Just know Cloey went through the ringer of tests, she was poked and proded every which way and didnt complain once! We were told the for some of the things they have had grown men cry, or big football players pass out.  Not my Cloey, She was Brave like Merida!

(Thanks Lobdells)

GI (gastrointestinal)- Cloey is doing great off of her G-tube! She had some irritation in her esophagus so she will be going back on Prilosec for reflux.  Things were also slow moving because of her past intestinal surgeries so she will be adding a daily stool softener, no biggie!

Pulmonary (lungs)- We were told previously at home that Cloey had a 30% lung function, and that this was typical of kids who were on breathing machines for long periods of time.  The pulmonologist here was not convinced because she does not have any kind of lung disease and can walk long distances on occasion.  He did some more accurate testing and biopsies and determined that while she does not have full function, it's not that low. Her unique anatomy makes it so she takes really shallow breaths, she cant really take a deep breath and fill her lungs like you and I do, but the actual function of her lungs is good!  This is great news and means she is not in danger if she pushes herself.  He gave us the go ahead to increase exercise, and that means fun too! He said she should not be written off as a "vent kid",  "She's Cloey, lets see what she can do" Seriously, this is why we come here.

ENT (ear, nose & throat)-Cloey had a scope done and the good news is after 10 sets of ear tubes her ears are doing great! The not so great news is her airway is still abnormal, and basically just too small.  Both the pulmonologist and and ENT said that if they saw her airway today,  knowing nothing of her history, they would say she needs a trach.  However, because they take the whole person and quality of life into consideration, they agree that doing that again would not be beneficial.  We will just have to be aware of it and work around it.  The other not great news is that her left vocal cord is completely paralyzed.  Which means we can stop trying to get her to improve her volume in speech therapy, its just not gonna happen! This is probably due to the injury on her spine either before or after her spinal surgery.  It also explains why its so difficult to hear her sometimes.  We may look into getting her some kind of microphone or something.

Urology (bladder)- This is probably the most exciting news, it appears her bladder is now functioning normally! It's just that it is a muscle that hasn't been used in 13 years so we will need to "train" it with timed voiding.  Cloey will have a watch that will alarm every 2 hours and she will have to "go" whether she needs to or not.  After about 6 months she should be able to be dry, at least in the day.  We are so excited for her! After 3 bladder surgeries, spinal cord damage and neurological deficits, this is really one thing we thought would never happen.  Not only does this increase her Independence, it also open up all kinds of new wardrobe possibilities!

Autonomic dysfuntion (system that controls automatic things like blood pressure and blinking)- While Cloey does not have full on POTS she does still have autonomic dysfuntion. This presents in things like her eyes dilating randomly, even when its bright outside, her blood pressure being low, not being able to store iron well, not breathing enough when shes sleeping, and a low heart rate.  There is no real treatment for this, it is just how her body works. Keeping her healthy, exercising and adding salt to her diet all help.

Genetics (chromosomes and genes)- There is still no reported cases of anyone like Cloey.  There is, however, more kids similar with one part or another of her disorder.  They are going to do more research and send me a letter if there is any new information discovered on the specific genes she is missing/has extras of.  They also said that Cloey is now the case used to care for other children that are similar, since she is the oldest living at 13.

Sleep medicine- This is the worst news we received, but still not terrible. Cloey still has severe sleep apnea (mostly because of her abnormal airway) and will need to be back on a breathing machine at night.  The tricky part is that they are not sure this will work, just hopeful.  We will stay in contact with them to make sure. The good side is that this should help her to not tire so easily and be so sleepy all the time.

Nutrition (diet)- Cloey's iron levels were so severely low that she had to get an iron infusion through an IV in the hospital.  We will have to check again in a few weeks and maybe receive another infusion while at home.  She will probably also have to take oral supplements.  A lot of factors contributed to this- her autonomic dysfunction, heavy periods, poor sleep and also not as much iron intake since stopping her g-tube feeds of fortified formula.  Cloey's diet will need to be monitored to be sure she is eating enough good foods and she will need to drink formula in the morning with her breakfast, something like ensure.

Orthopedics (bones)- All of Cloey's joints are abnormal, but not fixable and don't cause any major problems. That is all the same, not worse, which is good.  Her Spinal fusion is still solid (good) but her scoliosis has increased from very mild 10% to 20%, still mild but because of the increase we will need to repeat an x-ray in about 9 months and make sure it is not worse.  The standard practice is to wear a brace to correct it at 25%. One thing we have going for us is that it appears Cloey is just about done growing. Most of her growth plates are closed.  Scoliosis gets worse as you grow, so hopefully we've seen the worst of the curvature. We've always known Cloey would be smaller. There was a
question as to whether she had a form of dwarfism at one time, so we are very happy that she has gained enough height to see over counters and otherwise get around in the world fairly easily.  It's also easier to care for her if she's not taller then me so it all works out!

Cardiology- Cloey's heart is awesome! She has an irregular and slow heart rate, but that is not new.  The excitng news is that over a 48hr monitor her heart did great and responded to exercise. So this is not the cause of her fatigue and she is cleared, and encouraged, to increase her activity level.

Gynecology- Cloey has been having very heavy irregular periods.  We had an ultrasound at home that determined she had a double uterus.  It was recommended by her pediatrician that we have it removed and solve two birds with one stone.  However, it is not legal in AZ to sterilize the mentally challenged, even if its for medical reasons.  This is also an emotional decision for us, and we were not sure what to do.  We went to the Temple (a sacred place for me as a Latter Day Saint,  where I can meditate and pray) before I left and I felt comforted that, as always, I would know the best route for Cloey's care.  God may have given me a child with more challenges then most, but he has not left me alone in them.  So.......one of the first things we did when we got here was a pelvic ultrasound.   The Gynecologist was not sure of what she saw and wanted a clearer picture, so we had an MRI of her abdomen done.  The results were that she does not have a double uterus, its actually one uterus with a "divider" of fibrous tissue (kind of like scar tissue or cartilage).  This explains her heavy irregular periods, her uterus can't clamp down or shed the lining properly.  It also means eventually the tissue can be cauterized and her uterus can function normally.  For now she can be treated with hormones to suppress her periods.  I am not super happy about putting her on hormones, but I am happy with the thorough job mayo has done and that it will make her more comfortable and keep her iron levels up.  It also buys us time and means we can manage the rest at home.

More then ever before we are given the green light with Cloey. We may have to come back in 2 years, but only time will tell, and if we do it will be a maintenance trip.  She is dang near having a "normal" life and we couldn't be happier or more excited for her future. We also know this is largely due to all the support and prayers we have received on her behalf and we thank you from the bottom of our hearts!

Sorry Not Sorry

I was going to apologize for not posting for 2 years, but as I looked back at old posts, I realized how thankful I am that I haven't posted for so long. This Blog is meant to keep everyone informed when Cloey is receiving life saving medical care. By the Grace of God that has not been required for the last 2 years, and for that I am not sorry! We are, however, headed back to Mayo Clinic in Rochester MN on Monday.  The purpose of this trip is to evaluate Cloey's health and make sure we have a proper maintenance plan as she enters adulthood (eek!) Because her disorder has never been seen before, and the documented cases most similar to hers only lived until 7 years of age, Adolescence and adulthood is uncharted territory.  We will be seeing her team of about 15 specialists that will all work together to make a plan for her future.  For once, we are more excited then scared. I am planning on accomplishing whatever needs to be done to *possibly* make this the last time we will have to go to Mayo in MN before she turns 18 and is able to transfer care to the Mayo Clinic here in AZ.  This may not be possible, or we may need to do one more small trip in a couple years, but this IS the last of her donated funds and she is doing so well that we are sure going to try! It's been just over 10 years since our first trip there and as grateful as we are for all they have done, it would be so nice to put that chapter of our lives behind us.  I will be updating this blog during our stay, hopefully with all good news about our sweet little miracle girl!

Miracle's do happen!

It has been so busy I can't possibly catch you up chronologically, but we are coming home! Here is the final verdict-

Cloey does not have, or did not have Chiari. She has some old brain damage to her brain stem from the congenital malformation of her skull and spine, but the damage is not signifigant to her airway issues and is rebuilding neuro pathways at this point.  This is HUGE because it means she is NOT on an inevitable decline to a pacemaker, colostomy bag, 24hr ventilator, etc.

The next big issue was her autonomic dysfunction.  The sleep disorder specialist/neurologist, autonomic dysfunction specialist (also a neurologist), the endocrinologist, the pulmonologist and the POTS specialist, worked hard together all week to sort out her symptoms.  I mean, besides visits, they had several meetings together.  Based on testing and a recent study out of Stanford University (the sleep doctor consulted his colleague over there) It was determined that the majority of her problems are a result of her spinal fusion. Cloey's entire cervical spine was fused at age 5 to prevent paralysis.  It was necessary and she would be paralyzed from the beck down if we hadn't done it.  When they fuse the neck they don't do it completely straight, they fuse it a little bit forward to make life skills such as eating and using a computer more possible, unfortunately this study out of Stanford has shown that in some cases (particularly where the patients anatomy is narrow, like Cloey's) This increases pressure on the airway, and putting a trach in and using a vent, take away even more of the space making things worse.  Let me clairify, even though we didn't know this when the Trach was placed or when we placed her on the vent, it wouldn't have mattered. She needed those things because she was not able to breath adequately on her own, and as it turned out, They bought her 6 years to grow and open up more space in her airway.  Her sleep study from 6 years ago before trach and vent showed 70 apneas in an hour. This week, with the trach capped off and no vent or oxygen itshowed 7. Miracle. The patients in this study behave like quadrapaligics, meaning while they may have avoided complete paralysis, some side effects are still evident.  For Cloey, the fusion combined with her genetically small airway are causing her lack of bowel and bladder control, her weak intestines, her central apnea (brain not telling you to breath) and her irregular heart rate.  The good thing is this will stay the same or get better as she grows.  It is also the missing piece of the puzzle as to why she got BETTER on hospice without the vent.  It also explains some of her symptoms that they thought might be POTS.  The conclusion is that she does have some issues with her autonomic system, specifically orthostatic tachycardia (basically low blood pressure) but does not have POTS.  We were given recommendations to add water and salt to her diet, and also begin an exercise routine.  Again, these symptoms are also expected to stay the same or get better as she grows.

Than was ENT, we had a scope done on Wed, and everything looked good, not great but good enough to remove her Trach! It was done in the hospital and she stayed overnight in the PICU for observation and did great.  The plan is to use prilosec, flonase and singular to protect her airway from irritation and inflammation, also to watch her weight diligently because she can not afford anything else to cause airway obstruction.  Then we can use oxygen as needed.  There is a chance this won't work and she will have to be re-trached.  We won't really know for six months or so and will be doing scopes and sleep studies at home to monitor her during this time.  If it doesn't work, we may be looking at a trip back up here in a few months to re-evaluate.  But, she is doing really well and we are all hopeful this will "stick"

We also completely redid her diet for adequate adolescent nutrition, and only 1/2 time tube feedings! There is whisperings that the reflux medication and removing her trach could increase her appetite too, meaning a possibility of no g-tube in the future. Guess we are so used to tings snowballing in the negative direction it is hard to comprehend that they can snowball the other way too :)

Endocrine evaluated her as well, and ran some precautionary tests that we will get, and could be managed at home.  She mostly looked and things to rule anything else out and agreed with the yeam on the source of her symptoms.

I think that is everything...

All of this is an absolute miracle, one of her Doctor's said "No one expected her to be 11 and doing so well" I am sure this is the direct result of her super awesome medical team, hard work, service, sacrifice and prayer that she has received.  We could not be more full of Gratitude.  I was literally jumping and clapping my hands when we knew she would have her trach out. I can't wait to see her quality of life and independance blossom.  My brain looks at her and can't believe this is possible, but when my heart looks at her I see that baby in the NICU and say "I knew it"

Wow! Mayo has done it again

 Monday we were at the clinic all day, from 7am-5pm.  We saw the main doctor coordinating our care and spent about 2hrs with her.  We went over all of her symptoms and problems she is having. She agreed that Cloey has some sort of autonomic disorder that is causing her problems and set us up to test for one specifically called POTS that day.  The test was about an hour long and basically tested her nervous system and autonomic responses.  We discussed have a bronchoscopy on Wed to see what her airway looks like now that she hasn't been on ventilator support for a year.  We than had x-rays done of basically her whole skeletal system and saw the orthopedic surgeon who has been following her since she was 2.  For the first time he said her bone structure was "essentially normal", those two words never describe her so they were like music to our ears.  He said her spinal fusion looks great and her abnormalities look better than he expected them to look at this age. yay! Recommendations are to just to continue to monitor her about every 2 years, but to expect only minor fixable problems. double yay! This was one of our worries about her getting older, having to repeat the fusion or wear a brace or surgery on her elbows and hips.  So to hear that we are nearly out of the woods with that one is great.  We also saw pediatric surgery who is going to resize and replace her g-tube on wed while she is having the bronch done.

Today we saw the pulmonologist.  He had the test results from the test the day before and let us know that it did show she has autonomic dysfunction, it may be POTS or something similar.  We have not reviewed the results with the main doctor yet, so I won't go into specifics because we simply don't have them, but it means we have a disorder we can manage instead of putting her to sleep every night and wondering if she is going to wake up the next morning.  He went on to examine her and determined that from his stand point, she does not need the trach or the vent.  Whatever was causing her to need it before she has outgrown.  Probably fusion done 6 years ago has relieved the pressure on her brain and the damage from the "almost" Chiari, has repaired itself.  The neurons have had time to rebuild pathways.  Also, her facial structure that was preventing her airway has grown and opened up, allowing her to breath normally.  He shared his opinion with the sleep specialist who is also a neurologist and recommended a sleep study to determine if this is actually what is happening.  We see him in the morning.  He also is going to run a blood test to test for a specific gene for central hypoventalation syndrome (brain forgetting to breath) if she doesn't have it that is more evidence that she no longer needs the vent.  This is why we come here! more than an hour with each doc. Doc's working together and thinking outside of the box, or even just outside of their specialty. Combining studies and tests so she doesn't have to be under anesthesia more than once.  And most importantly, seeing her quality of life as a person and not just "one of these kids" and a chart to pass on. 

Than we saw the ENT.  She agreed with pulmonary, and from her stand point if the scope tomorrow and the sleep study come back clear.  SHE WILL TAKE THE TRACH OUT FRIDAY!!!! We were in complete shock, Ty literally asked her to clarify three times.  Decanulating (removing the trach) is usually a big deal involving reconstructive surgery, but in Cloey's case it wasn't placed because of her airway, it was placed because of abnormalities in her facial structure and brain, so her airy was is "essentially normal" meaning the hole will close on it's own, or at least mostly and may need only a minor surgery if it is not completely closed in 6 weeks. When it was placed we were told to consider it permanent, even if she got off the vent the chances of her facial structure and brain issues resolving were slim to none.  

Our heads have been spinning the rest of the day.  This changes everything! A year ago at this time we were preparing to say goodbye to her.  Maybe all the fighting for her for 10 years, giving her everything she needs no matter the cost, is finally going to pay off.  We are positively giddy at the idea of possibly seeing Cloey blossom without a trach or vent.  We also see what a miracle she continues to be, and the power of prayer.  eeeek!

Ok, back down to reality. We can't let our hopes get too high.  She still has to "pass" the sleep study and scope, and we don't know all that her autonomic disorder entails, but it's still exciting.

Ronald McDonald House was full, so we are on the wait list and are staying at a hotel at a discounted rate.  Everything else has gone amazingly smooth.  Of course, having both of us here helps a lot.  I am so grateful to everyone who has helped us financially and logistically so that we both can be here to share the burden and so we can make what has turned out to be some pretty BIG decisions as a team. It has really helped.

Tomorrow we will know lots more.....

Here is a picture of Cloey standing in front of a mirror that hangs in radiology.  when we first saw this mirror 9 years ago, it reminded us of her and we both got misty.  Ty says he is going to make one for her someday.  She has looked at her reflection in it every time we have come here since.

Life after Hospice

Cloey did it again! against all odds, she was discharged from hospice in May after a year without using ventilator support and having minimal complications.  Obviously we are amazed and so happy to still have our sweet Cloey with us.  

So what does this mean? Well, Cloey was due for several maintenance consultations and procedures 2 years ago when we started the whole Hospice journey, so now all the things we put off need to be addressed.  We also need to determine if she is truly "all better", whether by miracle, medicine or simply outgrowing her breathing (or lack of breathing) condition.  Or, if she is just declining more slowly than we had anticipated.  Figuring this out is VERY important. It's the difference between taking her off of her AND (allow natural death, formally DNR do not resuscitate) order and putting our efforts into teaching her life skills for her *gasp* future, or continuing to focus primarily on her quality of life and making her comfortable.  Her doctors and specialists in Phoenix are not sure what to do with her.  They are good doctor's but are simply not equipped with the multidisciplinary model of care or knowledge and medical advancements to manage a disorder never seen before in the world. To complicate matters, our sweet girl is also becoming a young lady. This means changes in her dietary needs for her feeding tube, and her hormone levels need to be evaluated. Not to mention, no one expected her to reach this point, so no one knows what these changes will mean for her or how they will affect her delicate system.  

First, we need to determine if Cloey is a "Chiari kid".  Basically, Chiari malformation is a congenital condition where part of your brain protrudes into the spinal column at the base of your skull, this condition is often seen in Spina Bifida.  When Cloey was 2 1/2, on our first trip to Mayo, it was discovered that she had some stenosis (pinching) in her spinal cord at the base of her skull just under her brain stem.  She had a decompression surgery done, where they took away some bone at the base of her skull and the first 2 vertebrae to relieve the pressure on her spinal cord.  She did great and everything looked fine.  The neurosurgeon explained that the procedure was the same they do for Chiari malformation, but that she did not have it.  2 years later on a follow up scan, it looked as though her spinal cord was at risk for damage again, especially because she was now walking and more active.  Because her entire spinal cord has low fluid the only option was to fuse her entire cervical spine and eliminate all movement in her neck, otherwise further damage would leave her paralized from the neck down.  The fusion was done at Barrow by one of the best surgeons in the nation and went very well, with no complications.  Fast forward to July 2010, we took her to Cincinnati Children's hospital to sort out her breathing issues.  The doctor reviewed her history and evaluated her.  He said he felt very strongly that she had had Chiari, all of her symptoms align with damage to her brain stem where her autonomic functions are controlled.  Things such as bladder control, breathing and heart rate regulation, eye dilation, digestion, everything your body is supposed to do automatically without thinking about it.  She lines up almost perfectly to a "Chiari kid" symptom wise. Unfortunately, the fate that comes with this particular malformation is an inevitable pacemaker, colostomy bag and 24 vent dependence, among other things.  I called her neurosurgeon that did the original decompression and basically said "but she doesn't have Chiari, right?" his heart was obviously heavy as he shared with me that he technically couldn't say she had Chiari because it is medically defined as brain tissue protruding more than 5mm, and hers was not quite 5.  He went on to share with me that, when he did the surgery her brain (at the brain stem) looked like a bruised peach.  He said he believed that damage lined up with her symptoms as well, making her unofficially have Chiari malformation.  This is when and why we decided to put her on Hospice.  But the decline didn't happen the way it should have if she had had a true Chiari malformation at birth, so we need to determine if the brain damage has repaired itself, basically if she "outgrew" the autonomic problems, or if we are still looking at Chiari, she is just stronger than most ;)

We will also be seeing-

• Dietitian and GI to determine adequite nutrition and the possibility of future g-tube removal.
• Urology to discuss managing her incontinence.
• Orthopedic surgeon, to evaluate her growth and abnormal bone structure.
• ENT to check her ears and evaluate her Tracheostomy
• Sleep disorder specialist to determine if she is still not breathing on her own when she sleeps
• Endocrine to evaluate her growth and hormone levels
• Neurology to determine the extent of her brain damage

This doctors will all work together as a team to determine the best plan for Cloey from here. It is going to be a very busy week full of decision making, but we are cautiously  optimistic, maybe even hopeful.  Could all the fighting for her finally be paying off? Could we really have a future WITH her and WITHOUT a battle to save her life every six months? Could she finally experience life with fighting for it? We can't really believe any of this yet, but the spark is there, and no matter what we are grateful for every extra day we spend with her sweet spirit. Being here again, using donated funds, seeing Ronald McDonald House and all of the volunteers ready to jump in and help any way they can, all of it reminds us how blessed we truly are.  This world IS still full of good people and kindness, and we are lucky enough to experience true love and charity once again. It really does take a village, and we are forever grateful to all of you who have contributed to Cloey's care in ways big and small. 

Weeks 9-15

So Sorry It has been so long since I have updated on Cloey's adventures. She has remained relatively healthy. The only decline we have seen is a decrease in endurance, but thankfully it has been a slow decline and Cloey is still able to do most things.

The stress of it all has finally taken it's toll on our marriage. Ty and I our both overwhelmed and obviously coping in very different ways. We are in counseling and working on strengthening our marriage.

In the meantime, Cloey (and Cal) completed buddy bowling and received a trophy! She also enjoyed a week at Ryan House where she got to be nurse for a day and take care of patients (teddy bears). She was able to participate in Camp Zoo and feed the Giraffes, her absolute favorite a animal. And the biggest change of all has been going back to Brisas! because of all that is going on with us, we had to re-prioritize and decided to put the kids back in public school. When we told Cloey she asked if she could go back to Brisas, I wasn't sure it would be possible but the kind & caring principle over there made it happen (Thank You!)

Please continue to pray for our family, your prayers are felt and much needed.

Cloey Adventures weeks 6, 7 & 8

Cloey has been on some hard core antibiotics for a skin infection on her leg. It looks like it is working and the infection is clearing up. The problem is the antibiotics have caused a major bout of diarrhea & yeast. Nothing we haven't dealt with before, but this time it's different. Poor girl couldn't sit down even after I called and got her prescription diaper cream. Than we had to fight with her to clean her up, and watch her cry. Seriously? I thought we were doing "comfort care" everything is so much harder now that our goals have changed. Speaking of hard things, I read this article recently and It captures the feelings and emotions of our situation Dead On. While I don't know what it is like to lose a child, everything up to that point is exactly what it's like for us. It was so hard for us to read. For all of you who are asking how we are, this article will give you an idea. My prayers are with Sophie's family.

http://tucsoncitizen.com/arizona-news/2011/06/26/a-young-girls-battle-with-cancer/#.TiJq1Rr3sxw.facebook

We also moved into our new place and are just getting settled. Cloey loves it because it has stairs. We watched fireworks and lit some sparklers on the fourth, but didn't go to Tempe Town Lake like we had planned because we were in the middle of unpacking. Cloey also got to run and play at Makutu's Island, something else she has wanted to do for the last five years. It is awfully dangerous with her trach, but she really enjoyed her freedom and we loved seeing her so happy & proud of herself. That's what it's about right?

Cloey Adventures week 5

We had a great opportunity through Hopekids to attend the Ringling bros Barnum and Bailey circus! in a box suite no less! The Scottsdale Fire Department really stepped up and covered Ty's shift so we could go as a family and Cloey was so happy to have her Daddy there. We all had a lot of fun. The best part is we got to share the suite with one of Cloey's best friends, these two seem to have a special bond and they had a lot of fun together.

Also this week I came in contact with two families facing trachs for their kiddos. It struck a bruised spot on my heart. These kinds of decisions are so hard to make and only the select few who have had to make life or death decisions for their child can possibly understand the weight of it all. In both cases, all the uncertainty and worry and pain of every decision we have made for Cloey in the last 10 years flooded over me. I know exactly how both these mommy's feel. The pain of watching them suffer mixed with the relief when the intervention works still mixed with the grief over the restrictions it causes. The constant quantity versus quality. I am in no way standing on a pedestal or saying that this kind of medical technology is not worth it, on the contrary I am very grateful for the technology we have today that has allowed Cloey to live years beyond her expectancy, I am just trying to convey the complexity this rare category of parenting goes through on a daily basis. To quote Annie "It's hard knock life for us"

The rest of the week has been filled with packing. When I came across Cloey's baby stuff I started to cry & had to find Ty for a hug, but after the initial tug at my heartstrings, We all really enjoyed talking about when Cloey was a baby. looking at her first pair of glasses, blessing dress, preschool artwork, and a video that was made for a fundraiser when she was 5. All of those sweet memories reminded me that while us "special" parents may have a hard knock life and bruised hearts, we also know a rare breed of Love and Joy That I believe can be found no where else but with these precious souls.

Cloey's Adventures Week 2, 3 & 4

• Ok, so I am lame on this updating thing, but I do have a good excuse. Check facebook or our family blog for details but because of a water leak we have been displaced for the last 2 weeks and now have to move. The good news is we have been busy doing fun things with Cloey as well! Here is the recap~

• One of the first things we did was a movie in the park. Ty was at work so it was just me and the kids. It was picnic style so we had no wheelchair for Cloey, it was at night & for once we didn't have to rush back to meet a nurse, and Cloey ran around and played with all the kids at the park.

• Then some of our dearest family friends and one of Cloey's best friends came down from Colorado for a visit! we had a fun filled week, taking our friends to church, going to the zoo, Cerretas Chocolate factory, the splash pad, the movies, and sleep over fun!

• For her Birthday Cloey got a kit that you can order caterpillars and watch them change to butterflies. I finally ordered them and all the kids had fun watching the metamorphosis, especially cloey who has 9 pet butterflies now.

• Cloey and I had the opportunity through HopeKids to see Valley Youth Theater production of Annie. Cloey just loves the Theater, going to shows is probably one of her favorite things to do and Annie was one of my faves growing up, so we had A LOT of fun. I really enjoyed my special time with her and I think she did too :)

• We also had some fun staying at a hotel, and then at Ryan House for a special family visit. It was like a mini vacation and I have to say the logistics were much easier without the vent and such. Cloey has not been in a pool for 5 years, while it is still risky with her trach, we go ahead and let her in. She LOVED it. S0 fun to watch her kick her legs when it was such a new feeling for her. She has shown such joy in her new found freedoms on Hospice and has become, umm shall we say, independant. We love the growth we see in her and it confirms to us that this step is what Cloey needs right now to reach her greatest potential.

• Cloey is a super star! Ty and her were pictured in an article on Ryan House. They caught her laughing, I was so happy to see my bubbly girl in the paper. She knows she's a star too, and is telling everyone "guess what? I'm in the newspaper!" http://www.azcentral.com/community/phoenix/articles/2011/06/18/20110618ryan-house-children-care.html

• After leaving Ryan House we went to Lenny's Burgers because everybody said it was the place to go downtown, and it was pretty dang good, but the highlight was Cloey eating an ice cream cone! she has only reluctantly tasted ice cream before, mostly in therapy, but this time she got it! It was like a light bulb went on after 10 years and she was like, "so this is what all the noise is about" it was super cute!

• We had a small pneumonia scare with Cloey at the hotel and I will admit my heart was caught in my throat. But Hospice worked like it was supposed to and we took care of it quickly and painlessly with no pokeys or hospital stays.

• Cloey, with Cal as her buddy, has joined an adapted bowling league in Tempe. It will be something fun and air conditioned to do this summer, so far they had fun. Cloey says she got a home run and 100 points! hehe

• If you noticed the new layout, it is in honor of Cloey's favorite animal and she helped me pick it out! also, Cloey has a facebook page now, look her up if you want to be her "friend"

• All in all Cloey has been her strong, fun self and we are loving it!

Cloey's Adventures Week 1

Cloey is now officially on Hospice Service. The process was pretty painless considering the circumstances. Ryan House is an amazing organization and and has made the process fluid, our nurse manager who we will be going through for all our needs is a nurse from Ryan House that we love and trust.

The part that stung the most was telling our favorite night nurse, and having morphine and ativan delivered to the house, which we will need to have on hand for comfort control.

Thankfully, Cloey has been pretty stable, she is tired, but we have not seen an increase in her weakness so far. She is now sharing a room with Lainey and loving it. I love tucking my girls in at night in a "normal" room. We don't have nurses anymore either, it's a little odd since we have had someone around at nights for nearly 5 years.

We have been getting mixed reactions from people as they find out. We have mixed reactions ourselves sometimes. Moments when we cry, feel guilty for not spending enough time with her, questioning if we made the right decisions all along for her, soaking in the joy that is her.

I heard a song from Wicked for the first time this week that reminded me of her. My Cloey Girl, You have changed me FOR GOOD

A New Chapter for Cloey

After a lot of time praying, researching, talking (sometimes arguing), crying & pondering Ty and I have decided to put Cloey on Hospice service and take her off the her vent (breathing machine). Cloey is a strong little girl and is still able to breath on her own, we hope that by doing this now we are preventing her being completely dependant on machines. We want to give her a chance to be a kid and to be happy. By putting her on Hospice we are not giving up on her, just making sure we have more control of her medical decisions. We will be avoiding the hospital like the plague and doing as little intervention as possible. We will no longer have nurses in our house every night, Cloey and Lainey will get to share a room, we can take her camping, and Cloey will be Home schooled with her brother and sister. Our first instinct was to quit everything and spend every second and dime with her, but we have decided that what Cloey deserves is a "normal" life. We will continue our daily lives and we are going to do as many family activities with her as we can, I hope you will follow them here as I do my best to update weekly on "The Adventures of Cloey"

10 years old!

Happy Birthday Cloey! I can honestly say I never thought this day would come. Cloey is such a sweet YOUNG LADY. We are so blessed for 10 years spent with her sweet spirit. Her birthday was a lot of fun, and if you have talked to her in the last 6 months you know she was looking forward to "being 10". She really wanted a sleepover with "pajamas and scary stories". So, since she has a nurse and needs her breathing machine at night, we decided to have a pretend sleepover. We played games, painted nails, ate chocolate chip pancakes and of course wore pj's and told scary stories. Cloey had a lot of fun. I have learned that Phoenix Children's Hospital is working on changing the term Do Not Resusitate (DNR) to Allow Natural Death (AND) so I will be using that term from here on. The last six month since we signed the modified AND, have been, well, different. Luckily Cloey really did not get sick this winter. But, it was humbling to come back and see all of her doctors and tell them about the AND. Some were visibly sad, some tried to think of something else to try & came up with nothing, some said nothing at all. But all have been supportive. I kinda wanted at least one to completely disagree and have some other option for us, but it didn't happen. Our doctor's appointments have been so strange compared to before, real laid back. Her 10th set of ear tubes that we had placed less than a year ago are out, and the doctor was like, "well I don't think her ears hurt right now, you want to just do nothing and spare her the surgery?" and if Cloey doesn't want to do something, everyone is just like "ok" She's the boss. My nursing and caregiving help has increased, giving me more time to do fun things with Cloey instead of just taking care of her needs. The sad development has been Cloey's increased dependance on the vent to breath. We are using the wheelchair more, limiting outings, having to go home and give her a "break" on the vent more often, she is more sedentary and will sit on the bench with me at the playground instead of play, she is unhappy more of the time, the nurses are seeing more dependance at night too. This is all weighing very heavy on our hearts. We are meeting with some of her doctors and care team and trying to make some REALLY tough decisions to keep her the most comfortable. The stress level in our marriage and family is at an all time high. We are trying to make impossible decisions, and still have all the everyday craziness of work, school, the house and the kids to take care of. But........one hug or giggle from that girl and it's all worth it, and we are lucky enough to get them everyday : )

Day 4-change of plans

Cloey's sleep study was moved to today, so we didn't make it to the zoo : (

The good news is we will probably go tomorrow, and be coming home Monday.

The not so good news is that we have decided to sign a modified DNR for Cloey, allowing respitory and pain control support only.

This trip, our last Mayo trip and her symptoms have concluded that there is irreversible damage to her brain, causing her autonomic nervous system (basically everything you're body does automatically: breathing drive, heart rhythm, pupil dilation, bladder/bowel control, etc.) to not function properly.

When she was born her skull was abnormal causing pressure on the lower part of her brain stem & spinal cord. This was discovered on our first trip to Mayo when she was 2 1/2. we did a decompression surgery (removing bone in her skull & spine) to relieve some pressure. It wasn't enough & subsequently fused her entire cervical spine to prevent damage to her brain or spinal cord. after the first surgery she showed some "signal changes", a black line on her MRI. she lost her pincher grasp in her left hand and had some overall left sided weakness, Hardly noticeable though. The spinal cord can usually grow around damage like that and she would probably recover. Since then her breathing etc. has deteriorated but there has always been another possible explanation. She has a spine x-ray every year and they have been perfect, no new growth or anything. It wasn't until this trip that all the pieces started to fit together and point to her brain & spine.

There is no way to tell if the damage was there when she was born or was caused during the surgeries, and it doesn't matter, she would be paralyzed from the neck down if we had not done it.

There is no "fixing" the brain. we have the choice to try to stay one step ahead of her symptoms (eventual 24hr vent dependence, colostomy bag, pacemaker, repeat spine surgeries, etc. etc) we could probably manage her for another 10 years, but it would be quantity not quality.

Cloey does not want that. she tells me she wants to take her g-tube and trach out. She wants to play with other kids. Today when we showed up to the hospital for a sleep study she wouldn't talk to me. She was kicking me and saying she wanted to go home.

As Ty and I talked about what to do, we remembered that all we have ever wanted was for her to be a kid. all the fighting has been to give her some kind of life. If we wanted her to just stick around and be on machines we could have stoped trying in the NICU. We could have put her in a group home.

What all of this means is that Cloey will still be on the vent, but minimal hours and rate, just enough to keep her comfortable. If she needs CPR they will do breaths only and not chest compressions. We might continue to do minor surgeries like ear tubes, just to keep her out of pain, but we will not be "fixing" anything. We will manage her care primarily at home, with a possible scheduled maintenance trip to Mayo once a year, should Cloey decide to fight the system like usual and stay with us for a few years. basically we will only be doing supportive care and allowing God and Cloey to decide when her work here is done

Are hearts have been heavy all week. we really hoped they would find something fixable. We truly appreciate every one's support & wish we could say "Thanks to you, Cloey will be fine" but instead it's "Thanks to you we were able to confidently make the hardest decision of our lives"

We will get the results from the sleep study in the morning but are not expecting any changes. Ty will be flying out here on Sunday to help me get Cloey home safely on Monday. Then we will start the process of signing the DNR and giving it to all of her nurses, care providers, etc.

While I am extremely sad and get physically sick when I think of losing her, I watch her and realize how much of her life she has spent being "handled" by doctors, nurses, therapists, caregivers, us~

It's time to let Cloey be a kid, even if it's only for a short while.

Day 3

We are in Ronald McDonald House! It's so weird, but even though I have never been to this one, it feels a little like I am home. I am sure part of it is the familiarity, but it's just so nice be around people going through similar things. For the first Time in three days, people are talking to me like I am a person, smiling & chatting, not just staring and giving me pity looks. Volunteers and parents with a free hand jumping to help, not to mention a real home cooked ham dinner. Cloey is happy too, she loves it here & of course everybody immediately loves her.

The kids make "all about me" posters to hang on the room doors with pictures and everything. Cloey was glad to see all the pictures of kids with trachs since this is the leading trach & airway hospital. Then She saw a baby with tubes all over and she said "look mom just like I did" yes Cloey, you sure "did".....

Cloey had an EEG placed today. It is wires glued all over her head with a little computer in a back pack. The neurologist wants to rule out seizure activity that could be interrupting her sleep patterns and therefore causing dependency & fatigue. We still have tests to do through the end of the week and into Mon next week. The doctors have an idea of what is going on and are basically trying to eliminate all other possibilities, unfortunately if it's what they are thinking it is, it's not good. please bare with me, it is very complicated and since we don't really know yet, I am not going to go into it now. Just know that our hearts are very heavy and we have spent a lot of time talking and a lot of time on our knees.

I want to end on a good note so I will tell you what we are doing tomorrow, Cincinnati has one of the nations top zoo's and Ronald McDonald has free tickets! Cloey will be done at the hospital by about one and then we will head over. Giraffe is favorite and she is excited. Thanks to everyone for all the well wishes!

Day 2

very long day, though not as bad as yesterday. no answers yet. tests planned starting tomorrow. It looks like the heavy decisions for Ty & I are starting.

Also, everyone was right this is a scary part of town, I am trying to not get out of the car at all. It seems worse then downtown phoenix!

on a good note, we got into Ronald McDonald house and will be moving over there tomorrow

We Made It

we are here. The day started out really good, we had some help with Cal & Lainey so Ty was able to take us to the airport & get an escort pass to help me get through security. Just to give you an idea we had about 10 bins and her wheelchair, all medical supplies and machines that cause some kind of red flag and have to be tested, so I was real glad he was there to help. unfortunately the day went downhill from there. Cloey was having a hard time breathing on the airplane so I got her ventilator from the over head compartment. it's heavy so I had to have help, and unpack it in the aisle, only to realize the cord from the vent to the battery was missing, so I packed it all up and sat back down and turned her oxygen up hoping that would help, it did for a while but turning it up made the battery die sooner. I didn't do anything at first because I wasn't sure what I would do and I was hoping she would come around. She got lethargic and sweaty and her stats dropped to 78 (bad). so I got back out and got the ventilator down, it has an hour of internal battery and we had over an hour and a half left. so I hooked her up, leaving my only option to bag her (basically CPR) when the battery died if she was still doing so bad. Thankfully, her stats came back up to the low 90's and when the battery died she was stable enough to make it the rest of the flight. It was super scary though, my hands were shaking.

So we got off the flight and went to baggage claim. We have 4 bags that are 50lbs each, plus what I had brought on the plane. A skycab was quick to help and took me to rental car so that was cool, but when I got there the company would not honor my reservation. Long story, but basically even though they accept debit cards & I had no problem making the reservation with it & I was willing to pay in advance with the debit, they would not give me a car without a major credit card which I don't have. The other four counters were all out of cars. One said they might have one in 2-3 hours. so I had to load all the bags on a cart and push cloey and the bags to the other side of the parking lot. they fell 3 times & I could barely lift them. Once somebody helped me pick them up though. so I get to the other side and all 4 of those companies are out of cars as well. I had to give cloey a feeding so I did that while I tried to figure out what to do, while doing that I noticed that her diaper had leaked. I had to leave the bags and take her in the bathroom to clean her up, change her clothes and wipe down the chair. At this point I was pretty frazzled. I hadn't eaten since a bagel that morning. It was 7 here, about 4 there. This also meant I was now driving from Columbus to Cincinnati in the dark. I called Ty and told him everything and started crying because we couldn't come up with anything to do but wait. I hung up and decided to try to make it back across the street to the airport with Cloey and all her bags so I could at least eat and then try to figure something out. I made it almost out of the parking lot when a lady working at one of the counters chased after me. She had heard me crying to Ty and called her manager and got me a car. (yay!) the only problem now is it was quite a bit more $ and I have to try and get the $ back from orbitz for the one I had reserved. It took me a long time getting all of the stuff into a car instead of an SUV, but I did it, found a McDonalds and was on the road. It took about 2hrs to get here.

It was now dark. All the handicapped places were taken so I was parked in the back of the lot. I have been warned by several people that this is not a good neighborhood. I asked the guy at the counter for help, but he said he was the only one working & couldn't go out. So I decided to take Cloey up to the room and leave her there by herself while I went & got the bags. I need all of her medical supplies to set her up to sleep so I had to get the bags there was no way I could wait till morning. We were almost to our room and Cloey threw up all over herself and the hallway, I took her shoes off (they were soaked & I didn't want her to track it all over) and pulled a table over the puke and had to tell the guy. I took Cloey in the room to clean her up & then we went out to get the bags. I was afraid if she puked again it would get in her trach and no one would be watching her. we got all the bags in and then I gave her a bath, did her night care & set all of her machines up.

Then as I got my netbook out to post this, I found my broken camera. The screen is all smashed. It's not a super nice one or anything but we had been borrowing my grandma's for a long time and finally been able to buy this one not even a year ago, so I'm totally heartbroken about it.

Sorry this post is such a rant, It is 2:30am here and Cloey's first appointment is at 9am tomorrow, so I should be sleeping. But I am feeling pretty beat down right now. I know it's at least partly because how she acted on the plane confirms her dependency on the vent. I had really though she'd be able to do it on just oxygen. I am sure in the morning I will see more of the things that didn't go wrong. Most of what did, is material and will be forgotton soon enough, being here to help Cloey is what will last. At the end of this horrible day my heart smiles just a little to know we are taking Cloey to the best to give her the best life possible and I will be able to do that for her soon now.
Goodnight~

On the road again.......

Well, the school year is over and supposedly they are planning on having a nurse for Cloey next year so that she can attend school starting on the first day. I let them know that if this does not happen I will be getting AZ disability law involved. I think they got the point.

Unfortunately Cloey is not doing well. We are not sure why, but she seems to not be getting enough support on the vent. This is very disappointing because we had expected to try and wean her off this summer. She is tired all the time even in the morning after coming off the vent. she can't make it through church, she wears out quickly, most the time she looks quite pale, her alarms are going off much more at night, and worst of all she is just crabby and kicks and screams a lot. SOOOOO not like her. I know she doesn't feel good. The doctors here have no answers. They have run all the tests and say that since her disorder has never been seen before she must be deteriorating & becoming more dependant on the vent, all they can say is that we could leave her on it for more hours in the day to make her feel better.


The doctors here & at Mayo agree that there is something wrong with her brain that does not allow her body to function properly at night. The question is, is the vent helping her. If yes, then what we are seeing is an inevitable dependence on the machine, at which point Ty & I have to choose whether to increase her time on the machine, decreasing her quality of life, until eventually we have to "unplug" her, or take her off now and let her go. If the Vent is not helping, then there is nothing we can do but take her off and let the deterioration happen. Mayo gets their pediatric trach and vent info from Cincinnati Children's, the leading in the Nation for pediatric sleep disorders. So, we are taking the last of Cloey's money and heading there in the hopes they will have an answer. There is always the chance that there is some adjustment, test, or surgery that will change the game completely. However small it is, if there is a chance for her, we will chase it just as we have always done. At the very least we will know we did all we could do, and possibly be able to enjoy the time we have with her.

I will be staying until I have the answers we need. Every night as I fall asleep I think about the choices we are going to have to make and cry. How can we let her go, if that is what's necessary, after 10 years of fighting with all we have for her. I think about all of the people that love her and that she has touched and who has helped us get her the best care. How can we make the choice between now or later? and my other kids, what would be worse, losing their sister or watching her live on machines for the next several years? Ty and I have cried and prayed much over this and ask for your prayers and support in whatever decision we make. Know that it will not be made lightly or for selfish reasons, It will be one that allows Cloey to be as happy as she can be, that is all we have ever wanted for her.


That being said, Cloey has a knack for proving us wrong. My heart is clinging to the hope that if we have to take her off the vent something will happen that will wake her brain up and fix everything. You never know. She will stay here until her work is done, that is for sure.


We will be leaving July 19th.

As most of you know, or can imagine, we maxed out our personal financial abilities to pay for her medical care, thousands of dollars and several years ago. Even with all of the help we have had, every six months or so Cloey has a major event that takes a financial toll on us. After accumulating hundreds of thousands of dollars in medical bills by the time we were 21, we filed bankruptcy. We sold cribs, clothes, everything we had to try to pay for her first trip to Mayo. I have never been able to work or complete school because of the level of care she requires. Ty has missed work over and over again, when she has been in hospital's or had surgery or traveling for medical care. Ty will not even be making this trip with us, we will have to make these tough decisions over the phone, because we can not afford the time off work. Don't get me wrong we know we chose to do this for Cloey, and we would do it all again with or without help. Just like with this trip. Cloey's fund that has been generously created for her, is running low. We will be taking Cloey and staying for all the testing or whatever she needs even if the money runs out. and Cloey's quality of life will continue to mean more to us then money. We only spell this out, to let you know that we would not accept or ask for help without first sacrificing ourselves. But even after all we could do, had it not been for the generosity of family, friends, church members and even some complete strangers, Cloey would not nave recieved the life changing medical care that she has. We have humbly learned that it is not possible to care for this little girl with an unknown disorder without the charity in the hearts of others, and we will be eternally grateful to them.



Cloey has once again touched some people's hearts and they will be holding a garage sale fundraiser to help her.



Thank you to everyone who has helped Cloey in any way!


Info on the fundraiser~

I was touched by a sweet little girl, Cloey Gibson, who loves all who she meets. Cloey was born with a rare genetic disorder, the only documented case in the world. She has gone through surgeries, treatments, medications, and currently has a tracheostomy to help her breath. It has helped her for a while but she is struggling once again with her breathing and needs further medical treatment.

We are doing a garage sale to help raise money so that Cloey Gibson can get the medical attention that she needs.

We are doing a garage sale for Cloey
Saturday, July 10th at 6:00am,
3376 East Thornton Ave. Gilbert, Az 85297

I need people to volunteer to help that morning with the garage sale, to donate items, to collect items or donate money.

To help contact via email katsmilemom@gmail.com


I am looking for donations of new and gently used items.

New items such as, jewelry, candles, pamper chef, hairbands, empty photo books, scrapbooking supplies, handmade crafts, new toys, new baby items, etc.
*New items sale better then used and we can sale them for a little more money.

Used items such as, gently used baby items or furniture. Gently used toys, bikes, clothes, furniture, anything else that you have in good condition that you would want to sell for a great cause.

100% of the proceeds will go to pay for medical care for Cloey Gibson.

Please spread the word anyway you can.

Stuck

Well since we have been home from Mayo nothing has changed. The report sent back, said that depending on more testing Cloey could possibly be less dependant on the vent. Since taking her off involves many doctors agreeing it is safe, the nursing agency and the state, we are at a stand still. Her pediatrician wisely suggested we not make any changes during flu season. At that point, depending on her pulmonologist, we may be able to move forward with weaning her off the vent. The process of getting her in school is also a sticky mess. I will post if there are any changes, squeaky wheel gets the grease right?

I know Cloey that's exactly how I feel......