Chloe Grace's Medical Fund

Chloe Grace is our beautiful 13(soon to be 14!)year old daughter.  When I was 22wks pregnant with Chloe we found out through an u/s that she was showing fluid on her kidneys and she was monitored closely until they ended up having to deliver her at 34wks due to low amniotic fluid from her kidneys unable to produce enough urine. We thought her kidneys were going to be our biggest challenge but little did we know the extent of what would be a permanent life long struggle for our beautiful girl. When she was delivered there were facial and other anomalies that we had not known about and I think back to how I could hear the nurses whispering about showing her to me because of the large birthmark on her forehead and cleft lip but when they did, I honestly couldn't get past how adorable she was and how much I instantly loved her.  They would later be removed and repaired but I missed her little triangle mouth and rubbing her furry birthmark. They were part of what made her so special and unique. We did find that her right kidney had(and still does)severe hydronephrosis but is still functional and her left kidney was basically  just a non-functional ball of cysts and never formed into a normal kidney. Many surgeries and specialists later and we still do not have a diagnosis for Chloe. They are certain she has a syndrome due to her various anomalies at birth but extensive genetic testing has never come up with anything. As hard as it is not to have some sort of diagnosis I've learned to let go of the reasons of why or what caused all of this and just enjoy her and her life. A diagnosis doesn't change much and since it seems to be something rare we would be left to treat the symptoms of it like we already do.
As Chloe has gotten older she has developed various issues. We knew she was not meeting milestones as a baby and she was eventually diagnosed with cerebral palsy.  She is unable to walk, talk, sit and relies on  us 24/7  for all of her needs.  Complicating her already limited functions is her epilepsy. Around 1 year of age she started having "spells" that would eventually be diagnosed as seizures which as the years have gone on have become progressively worse to the point that she is now diagnosed with intractable epilepsy. She is currently on 3 different medications and ketogenic diet to help control them but she still has her good days and bad days with them. She has unfortunately gone into status seizures(non stop seizures) 3 times in the last 3 years although we've come to find that each time she does this is when she is severely sick and it becomes our warning signal for it. I don't like that she has them but because she can't tell us what is wrong and how she feels this lets us know its time to get her to the hospital and each time has resulted in ICU stays for various ailments.

In 2010-2011 we noticed Chloe was struggling more with normal breathing and her alertness had decreased significantly. Many, many doctor visits later with no real diagnosis or answers the decision was made for her to get a tracheostomy. This was extremely hard for us to do because, even though she had so many issues, she was actually a very healthy child. Up until that point she had only been in hospitals for surgeries and sailed through the usual colds and flus as well as our other girls. However,  the minute I walked into her room after her surgery, I knew it had been the right thing to do. It was scary to see her with the trach and the extent of care it would need but she looked soooo much more comfortable with her breathing. There was no more struggling when she breathed and from that moment on I was so happy that we did it. During this hospital stay she also had a swallow study done to see if she was aspirating while eating. We were always very proud to have her eat orally when so many kids in her condition had always had a feeding tube even though it had actually become increasingly hard to feed her and most feedings would take an hour or more.  I've realized that me and Chris can be a little stubborn when it comes to change and we probably believe a little TOO much in Chloe's abilities sometimes so we showed them that she could still eat orally even though the swallow study showed she had issues with it. We went home after she recovered from her tracheostomy but soon realized any oral feeding ability she had had was pretty much gone and she was put on a nasogastric tube until we could get her back in and have a feeding tube placed permanently about a month after her trach. This became another one of those lightbulb moments of Ah! Okay, this isn't a step back for her but a new way to make her more comfortable and it also became a burden lifted that we didn't realize we had. Now when she got sick or was overly sleepy we didn't have to worry about pushing fluids orally that she was unable to process anyway. Plus, she gained weight! I look back on pictures and see how very skinny she was and kick myself for waiting so long to do it. She became so much more healthier looking afterwards.

As Chloe has gotten older we've seen subtle but significant decline in her health and abilities. She had always been able to sleep through pretty much anything if she wanted to but over the last couple of years her alertness and interactions have become less and less and her sleeping time even more. I'm still not sure if this is due to the amount of medication she has to be on for seizures, the seizures themselves, or a progressive regression. We still will see peeks of her smile and old personality here and there but even looking back at pictures of her I can see such a significant change that it breaks my heart. I've questioned various doctors but without a diagnosis we're still just left to treat symptoms as they arise. Unfortunately,  in the last 3 years she's had to be hospitalized 3 times for pneumonia and flu and most recently in December 2014 for a systemic fungal infection. These 3 infections had started out normal enough but progressed quickly to sepsis(blood infection)leading to ICU stays for 2-3 weeks at a time each time. We know each stay has taken a little piece of her and caused some weakening each time which has in turn caused some changes in her daily care. Even though Chloe had to have a trach placed in 2011 her respiratory function had actually been great up until this last hospital stay. Most doctors and nurses were always surprised when we would tell them she required no supplemental oxygen at home. Unfortunately, after her septic fungal infection in December she has required 24 hour oxygen supplementation. This has been a big change for us. I've always been used to the extra care she's required and limitations on some places we go but now we are hauling around O2 monitors and tanks and constantly worrying about her tanks running out so I find myself limiting where we go and for how long. She was able to return to school in mid-January and our supply company had a large stationary tank delivered to her classroom but, because we want her portable tank to have enough left for the bus ride to and from school, it limits Chloe's nurse to keep her mainly in the classroom for the day.  

For this reason, we have decided to start a funding page for Chloe's extensive medical costs. We are currently trying to save enough to buy a portable battery powered oxygen concentrator to help in allowing her to have more freedom on where she is able to go and for how long. Our health insurance has changed over the years and we've found less stuff that they will cover and more out of pocket payments than ever before. We've always taken on Chloe's medical bills, monthly prescriptions, special needs briefs, and various equipment without a second thought as to doing it. It's always just been a part of our life. We are lucky that my husband's job is able to provide our house and every day needs but the extent of Chloe's daily needs has always been a little out of reach and we always have had some sort of debt related to it. Eventually we will need to put a ramp on our front porch and as she has gotten older and bigger I find the upstairs trips carrying her to the shower has gotten a bit much for my 5ft frame and even my husband has realized eventually it will no longer be an option to wash her up anywhere other than in her bed or chair.  We looked into adding on a handicap bathroom to our dining room(which is now her bedroom on the main floor)but the price of it is way more than we could ever handle.

It is always tough for us to ask for help and even though we have awesome support from family and friends, I've come to realize there might be a possible way to make life a little more comforable for my beautiful girl and in the end that is always the most important thing to us! Thank you!

Chris and Kori Francisco