ISOLATION: The pathway to your own room!

Chloe and her friend Max the night before he left KKI.

About two nights ago, Chloe spiked a low grade fever. This is a red flag in a pediatric unit. RSV, the virus we tried to keep Chloe getting for as long as possible from the moment she was home from the NICU, can be deadly in a place like this, with so many vulnerable children. The moment they found she was running a  fever, a protocol broke out in the form I have only seen in the movies such as, "Contagion" or "Outbreak". People only talk to us now wearing yellow paper ropes and masks. Chloe can no longer leave the room, everyone now comes to our room to perform therapy, we don't leave. They quickly moved Cody (our roommate) and his parents out of the room. Luckily, so far RSV tests have come back negative, as every other test performed on her, all the flu's and whatever else they have tests for. It looks like what she has is a cold or some sort of sinus infection. We have kept Chloe as isolated as possible so far in her life, to keep her from getting sick and to keep her lungs healthy. All of a sudden, she is being exposed to quite a lot being here. Playing with other kids, playing with other kid's toys, living in a room with another kid, it is just inevitable. Now that she is a little bigger, a little stronger, getting colds are not such a huge deal, and while it is still a littler earlier than I, or some of her doctors wanted to start exposing her, it just is what it is. It is interesting being here, there are a few kids are here because they caught various illnesses while a baby or toddler.  Meningitis, or other viruses which caused an autoimmune response and caused disability or paralyzed the kids. It is enough to make someone paranoid. Regular full term, healthy kids that caught random illnesses that had a serious impact. How I will get through the experience of having and raising Chloe, and all that I have learned, and not becoming OCD will be a nothing short of a miracle.  But Chloe does seem to be recovering pretty well. About an hour after getting the fever it went away, and by the morning she was up playing, laughing, and causing trouble. Fighting a cold for sure, runny nose and lethargic, but it is letting her do some of her favorite things, such as getting salt spray in her nose and then getting snot sucked out with the little nose vacuum. Yeah, no joke, she actually enjoys this, holds quite still while it is happening and after her turn, she in turn sucks snot out from Penguin, Elephant and Duck. (These are the names of her stuffed animals, I bet you can't guess who is who...) So anyway, poor Chloe and her fever, while I never have wished it on the sweet girl, has turned our closet, submarine of a room to a master sweet. Well, and also, Cody and his parents get a room twice our size all to themselves. Now that I am probably a runner up for horrible mother of the year for actually thinking we struck the lottery because we now have a private room. It has been a treat because you don't realize how much added worry is added to your day when you are worried about being too loud, too bothersome, or not giving your roommate enough space, until all of a sudden you don't have to worry about those things! At least Chloe can sleep when she wants and have the room quiet so she can recover! She has been adjusting and hasn't gotten too stir crazy yet staying in one place. She has managed to keep her self occupied moving the furniture all over the room. One of her favorite pastimes is rearranging furniture. All the attention from Nana and Money (her name for me, hummmm...)make it tolerable in the room. And after her week of attention and playing with Dada, Nana and Money will have to do!
We had a great visit from Dada for about a week over Thanksgiving, it was wonderful. Evan loved finally seeing what was going down here, and loved seeing her be goofy and interacting with other kids. He stayed at the hospital with Chloe and let me sleep at the RMH, which was, about the best gift. Evan thinks she has to be one of the funniest kids, and his words, "I watched all of those kids, she is for sure the funniest." :)It might be because she loves wearing the purple, sterile gloves that the doctors wear for half the day, or checking every one's pulse with the stethoscope, or chases Mason in hopes to catch him and hug him, yeah any of those behaviors about does it.
We have gotten in our routine, and Chloe is still doing awesome. Talking with the nutritionist today, taking Chloe's height to weight ratio is in the fiftieth percentile. Which means, she is getting enough nutrition to grow. Not looking at growth charts with adjusted and actual age, just knowing that with her height right now, her weight is great! What a relief! We are managing to do this without the feeding tube right now which is huge!
I love that they introduce new food to Chloe everyday. So far, she is pretty accepting of all food, so it kinda proves this isn't about finding a "food she likes". She likes everything as of right now! Of course, hoping she moves out of the pureed everything such as pizza, grilled cheese, black beans and cheese, pancakes, creamed spinach, broccoli and cheese and then it will be even better!
A little sad we have lost a couple of friends who graduated from the program. These kids were around Chloe's age and they played really awesome together. They left the program happy, which is great news from our end! Many of the kids coming in are older, so we have lost a couple playmates, but it won't make much of a difference anyway until we get out of isolation! We are over half way done and feeling good! 

Forget playing doctor, we are getting the real deal!

First, let me say what an awesome patient Chloe is. I mean it is a bit ridiculous. Is it because she has been so used to being a patient in her short life (which is a sad thought, but maybe true...) or is it because she is so darn easy going? There is this vet kit my parents have at the house, and Chloe over and over again wants me to take her blood pressure, check her ears, check her reflexes... so you can imagine how much she loves being in the hospital right now. This gets done at least twice a day. Most kids in this program have to go through part of their therapy using the play doctor items to releave the anxiety for things as simple as getting their blood pressure taken. Nooo, not Chloe, she signs more after the nurse is done. Oh, and don't even get her near a hospital scale, the one she can step on to get her weight, exciting stuff let me tell you. Wish I felt that way every time I passed a scale, eager to jump on, hold on and wait for the digital number to pop up. So, my daughter loves being a patient, which I guess at this point, is a good thing!
At least being here has given me a break from feeding her (other than bottles), which is nice, I get to step back from the fight and take my gloves off. I fed her her first 3 meals, then the therapist have taken over from there. I don't even get to sit in the room, I am off in an observation room watching the action. For those of you interested in psychology, especially behavior psychology this is the place to see it in action. I can't help going back to my short stint as a dolphin trainer and now watching Chloe in that room I am hearing dolphin squeaks in my mind. Using the same psychology they use to train dolphins. The first two weeks are supposed to be assessments, assessments for toy preference, for eating preference, and more. Watching them hold a spoon in front of Chloe for a half an hour, and Chloe just staring at the wall or falling asleep. I can see how some parents are like, "What the___?". Which, I guess happens often. But all of this is gathering info for what the child refuses, how she refuses, what motivates her to eat, what motivates her not to eat to build the program that will help Chloe the most. So many kids with this problem, and so many variations of this problem. They ended all the data collection early and went straight to treatment because they weren't getting a lot of variations on their "graphs" because Chloe was so passive. I mean she would just refuse the food by turning away, staring them down, falling asleep, but no way was she gonna break! I knew I had observed this behavior in action...she for sure gets this behavior from her Dad!! :) Haha! (Slightly kidding my darling!) This determination of course has helped her in other areas in her life, but is not coming in handy at the moment.
Treatment has begun, they have introduced two new foods, so she is eating black beans with cheese, applesauce, pears, mac and cheese, carrots and green beans. And when I say eating, I really mean they are shoving it in the back of her mouth with a NUK brush. But she is not putting up much of a fight.  At least she is swallowing, and not spitting out. She may gag on carrots and the green beans but is getting them down. She loves her therapists and is quite the flirt. With the way she is acting I think she thinks she is going to marry Kevin the therapist who feeds her half the time. She loves being with the other kids, there is time for her to play and interact with them and she is just a riot to watch. Tonight she was chasing and being chased by Max, a fellow patient who uses a walker. She would go hide behind the corner and jump out at him leaving him in giggle fits. Her and Max are quite the pair. Her obsession with spiders has continued and Max gave her two spider rings one night, sealing their friendship forever. She also loves playing cars and trains with Mason, and loves taking all of Cody's (our roommate) toys if she gets the chance. We get to play in the therapy garden when the weather is nice. And Chloe loves riding the buggy that fits all the kids so they can scoot them all over the building. She loves music therapy and one night we had music in the lobby and she kept rushing the stage. We have been able to get to the aquarium, where Chloe's favorite thing was the jellyfish, which she continually called spiders, but what the heck. They keep us quite busy day and night which is good.
The therapists, such as the OT, PT and Speech are amazing and amazing to watch. They basically solely work with kids and this problem so they know what they are doing and get right to it. 
One thing I can say for sure, for sure is I AM SO GLAD WE DID NOT GET THAT FEEDING TUBE! Period, end of story, have my reasons and there are a few. Of course if she hadn't improved, we would have had to have gotten it, but thank goodness she improved and gained weight when she needed it. It adds a whole other set of problems for these kids and I think, makes this process even harder.
Tomorrow is the big meeting where we get to meet all the specialist working with her and find out the big plan, the goals, where we are and where we are going. Here's hoping Chloe will be cured by next week! 
LASTLY, THANK GOODNESS FOR MY PARENTS!!! I would not have been able to get through this experience, even these two weeks and kept my sanity without them. They have driven us out here, given me breaks, a chance to get away from the hospital, helped me get us adjusted to the new schedule and been a great all around support. Chloe and I are so lucky to have them here. It is nice to know I can take breaks and she is with someone she loves (I would say probably more than Evan and I...)is comfortable with, and sees as a big playmate, which she does with my parents. It is true that I might have had to hold Nana down a few times from keeping her from running into the feeding room grabbing Chloe and getting as far away as possible from these mean, mean therapists... but we have all stuck in there. Thank you and I love you!

What does it say if you turn on the heat and the smoke alarms go off?

It means you live in Florida and the temperature is getting down in the 30's. The poor house, poor us! No joke, we slid the button to heat and the world ended, well okay, the smoke alarms were so confused they thought there was a fire and it seemed like the world was ending.  Mass confusion. It is a weird feeling, the feeling of after so many months of feeling hot, then waking up to feeling, well feeling cold. The feeling of not wanting to sleep with blankets, walking outside and sweating, blasting the air in the car so your kid is comfortable in the sweat box that is otherwise known as a car seat, and then the next day set your house on fire turning on the heat. But I must say I am enjoying the cooler temps. It has been so flippin hot here. My poor in laws were here for the holidays and all I wanted to do was turn on the air conditioner I was so hot and sweaty, but of course they are from more comfortable or cooler winter climates and just didn't get it, because they were enjoying the warmth. I do enjoy the Florida winters though, very nice and just about make putting up with the summer here worth it.  I know that those of you up north of Miami, which might be all of you, are rolling your eyes. But I thought of each and every one of you as I put my musty sweatshirt on to wear to bed tonight. It made me think of the good ol' days growing up in the St. Louis area, where if you didn't wear a sweatshirt and winter hat in the house during the winter you just weren't comfortable. It has been so long since I have updated the blog, much has progressed in the life of Chloe. Well, my daughter went from learning to sit to crawling in just two weeks! I mean she was ready to move and just needed some good therapy to give her the know how. The therapist says she has never seen anything like it and can't contain herself with how well Chloe is doing. The therapist says her muscles are having a hard time keeping up with what her brain and body are learning, but the muscles will catch up. She is hitting those milestones with a vengeance! She probably will be riding a bike by next week. And all of a sudden I am finding myself having to take my poor daughter in the bathroom with me because I can't leave her alone for one second because she is into the new and exciting world around her. Feeding therapy is a much slower process. So far, she likes Cheetos and Nutella. Yeah no joke. All you mothers worrying and stressing about setting your kids palette with nutritional food- ha! I mean nothing has brought me down off my high horse more than raising a preemie. You have good intentions and you have your set opinions about certain things, but you just have to go with the flow and somehow help your kid get over their aversion to having anything in their mouths so they at some point eat the nutritional foods you want them to. We are going four times a week to feeding therapy and sometimes during the sessions I think the demon who posses my daughter during feeding times is going to use her demon strength to throw the therapist out the window to her death. But then it is time to leave and we walk out the door and it never fails Chloe gives the therapist a big, excited, can't wait to see you tomorrow smile. It cracks the therapist and I up. The doctor has given us one last week before considering other avenues for getting the calories in Chloe. She just isn't gaining enough weight, and still only taking a bottle when asleep. But she is growing up so fast in other ways she now has an invisible tooth! This first tooth has to be the most anticipated tooth ever, I mean 16 months actual and 12 months adjusted, at this point I just assumed we would get a nice pair of dentures for her and that would be that. You put your finger in her mouth and feel it, but when you look there is nothing there. I was not expecting this with tooth development. I mean we have been anxiously awaiting this first tooth to come in, and when we first felt it, we got so excited we just looked and looked in her mouth, but nothing but pretty pink gums. Then I stared, waited for the tooth to pop up, nothing, very strange. I mean how long does it take to pop up once you feel it??! Is it under the gums? There is a tooth there and it makes sound. This has gone on a couple days at least. I just keep putting my finger in her mouth so I can feel it is real, and then next I go get a drinking glass and have her gum the glass so I can hear the nice clanky sound the tooth makes when it hits the glass. I repeat this pattern several times a day. I mean, don't be scared tooth, Chloe doesn't like to eat food so you won't have to work too hard, show your face! All this leads me to the obvious conclusion she has an invisible tooth, and I am excited to see what other super powers she may develop as time goes on.  Chloe has developed some lovely new passed times. She likes to pick our noses, so we quit buying tissue she is so efficient... just kidding. I don't know why the fascination with noses, other than her parents have prominent ones, or she is going to be an ear, nose and throat doc when she grows up. What do you want to be when you grow up Chloe? An ear, nose and throat doc. I mean it kinda makes sense. After picking other people's noses though, she then usually comes at you with an open mouth tries to eat your nose. Medical school will clear that confusion up though. Chloe has inherited her Uncle Avery's "arm flapping like a hummingbird when excited" trait. (Okay he stopped doing it a couple years ago.) But it is pretty funny, Chloe exhibits this when the following animals walk by; a cat, a dog, a duck. This behavior leads me to believe her second career choice is a veterinarian. Having the in-laws here for the holiday was great excitement. It was a learning experience for me, balancing the relatively new mother to a crawler duties with all the other things hosting Christmas entails. Which in my case the hosting duties turned out to be not much, so next time I will do better at meal planning.  Non meal planning leaves you to have a lovely dinner of spaghetti for Christmas. Chloe was not sleeping well Christmas week, probably due to the invisible tooth coming in and the excitement of Santa, (Okay it was really me who was excited about Santa) therefore Evan and I were a bit sleep deprived. I forced the fam to listen to my Christmas music and it took us all day to open gifts, which was kinda fun. Chloe cared nothing of opening gifts but cared everything for the new toys. I have to admit, I got a little impatient and just started opening them for her.  Next year I will probably be snooping to see what Chloe is getting, I should be ashamed, I am, I am ashamed. Santa forgive me.  

We are on a roll....!

Chloe and I finished our first official 5k race together on Saturday! Some of our friends and I got up early to run the Annual Key Biscayne Lighthouse run, and it was so much fun! Chloe is really starting to like her jogging stroller! Most runs I find her half asleep when I go to get her out, or she is banging Sophie on the side of the stroller the whole time. It is so fun this is something I can do with her. Anyway, I hope many runs are in our future. So not only are we are on a roll with getting back in shape, but Chloe is getting back in shape with PT and feeding therapy! We start OT this week! Whew! What a huge relief it is that we are on the right track finally. I was starting to have panic attacks every time I thought about her not getting help since July. Love, love. love Chloe's therapist for PT and the therapist for feeding. Feeding therapy is so interesting. The things they come up with to get kids to be less sensitive with their mouths and to learn to chew is pretty cool. Some days she does really well, and will eat some rice cereal, and other days not so well. It is a slow process. Chloe's PT has a preemie herself, a preemie who had lots of problems, so she has first hand experience, which I think gives her a very kind, soothing way in which she handles and works with Chloe. She is close to sitting up, but gravity took a toll on Chloe being out of the womb so early, so she has some muscles to work and some things that need to be better aligned with her body. During the PT sessions you can't even tell Chloe is working. The PT just pushes on her body in different ways as Chloe plays. Then Chloe falls asleep after and sleeps for hours because she has worked so hard. Pretty cool. But her schedule is all messed up with time spent in the car going to appointments and with the time change. I had no idea the time change would change so much! Any other moms notice this? The weather is finally getting beautiful down her. It is like spring in the Midwest, everyone is in a good mood and looking for things to do outside. It has made Chloe's and my life much more fun. We were able to take her out on a boat ride, which she loved. We were able to take her to the beach, which she loves. Every Saturday we go to the farmer's market and have lunch with friends. We took Chloe on a trail in the Everglades. Florida is wonderful in the winter. Except for the brown widow outbreak in our basement screened in porch, we are ready to be outside all the time. Yes, I said brown widow's, just like the black but brown with stripes.  I spent my whole life knowing I just had to be weary of two spiders, the brown recluse and black widow and now I find out there are many varieties of the black. I thing spiders get a bad rap. They kill pests, they are beneficial and I am not for killing spiders, but I am just not sure I can have them around Chloe. I don't mean just one or two. I can go out at night and at least find 5 right away. So the new thing is figuring out how to get rid of them down there. We also have a gang of raccoons breaking into our screened in porch at night. I was coming home and going up the stairs and one jumped over my head, no joke, to get away. Evan wakes up at night to find them rummaging through our diaper trash can we keep on the porch. So that is what is keeping them coming back. We will have a lame Thanksgiving without family this year. We waited too long to get tickets to go anywhere and it would be nice to keep Chloe healthy for one more winter, not expose her to airports and lots of people. Have a great Thanksgiving, enjoy the food, family and friends! One of these days Chloe is going to love turkey!

The number 13 and other frighting stories

It is only fitting that in honor of all hallows eve Chloe managed to weigh 13 lb. 13 oz! OOOooooo such bad good luck! I mean any other time it would just have to be bad luck, but not now right?! Very appropriate, weigh to go Chloe! (Get it? ;) Another weigh in, another day of the doctor saying okay see you next week, but I am threatening if she doesn't gain next week, in the hospital she goes. The doc thinks the threatening is working so she makes sure to do it every time we leave the office. Maybe it is working because she has gained about a pound in a little over two weeks. The feeding therapy and the new mixture in the bottle seems to be working. I mean it is going to be a slow process with the therapy, but I really like the therapists and she uses so many good ideas. But Chloe doesn't like eating anything but butter, butter with a few crackers or bread crumbs thrown in. I mean I am not thrilled my daughter only eats butter and a bottle of mainly Pediasure, but at this point whatever goes down her throat without a fight seems a relief to me. Of course it drives me crazy, but it is putting calories on her, it is helping her brain grow (I hope). After a knock down drag out fight with Early Intervention, I have come out of the battle with getting PT and feeding therapy covered by Early Steps. This is a huge victory considering our insurance doesn't cover any of these therapies and Early Steps was only going to cover one thing, whatever  Chloe needed most at any given time. We are forking out our own money to make sure she gets OT, which is totally fine and we are so happy she will be getting all of these, when I worried she may not. It was also nice in Illinois the therapist would come to your house... here I will be driving, four times a week to Miami, but it is a luxury I can give up if it means she gets the help she needs. RSV season is upon us again, and it sure would be nice to keep Chloe healthy for one more winter. It has been so nice being able to take her out of the house, go to the grocery store, go to a friends house and just get out. I mean I still sanitize everything like crazy and not a day goes by I don't wash my hands fifty times... but I have almost forgotten the days of quarantine! I don't think it will be as extreme as last winter, in fact I have no idea exactly what the boundaries should be. As I was reminiscing about last winter, I was also thinking about Chloe's beginning. I mean it is true, I had her early, she weighed small, but there is more to the story. I think back to then realizing there was so much I didn't know. So much I didn't know about where life was taking me. All I knew was in my pregnancy book it said when I reached 24 weeks it was the point where technically my baby could survive out of  the womb. Um....but there is so much more to it than that. On my preemie support group there are so many stories, so many different stories, everyone's is different.  Every day past 24 weeks counts. There is such a huge difference between a 24 weeker and let's say, a 27 weeker or a 30 weeker, 32 weeker or even a 25 weeker. I mean your chance goes up something like 25% if you could just be born at 25 weeks than a week before at 24 weeks. It might be a taboo subject, but Evan and I were allowed to choose no care for Chloe when she was born. The doctor came in, gave us the facts, and then said, you choose, the only time I give people the choice is at 24 weeks. Evan and I looked at each other and decided to look at situation when it came. We, just, if you will, wanted Chloe to decide. What clues would she give us that her time here was not meant to be? Would it be a grade 4 brain bleed? Would it be that she was too small? They had told me that if she weighed less than a pound, they would not have the equipment to save her. But somehow she came out kicking and screaming to survive and gave many clues she was here and she was going to stay! Breathed on her own for 3 days, no brain bleeds-ever, and somehow the medical equipment fit (even though she did lose a toe because it barely fit...) I have no message here, no words of advice, this is just my experience and I think many people would not know this part of the story. I wanted her to fight to live and she did, I didn't have to make the decision, so I am lucky. I think about all the medical equipment she relied on, and doctors she relied on, and how freaking amazing it was she survived, not only survived but thrived.  What a crazy life, and sometimes I still get angry that this happened to Chloe, but most of the time I am loving the little girl I have. She is so cool. Even with all the work, I look at her and wish I could be as happy as she is all the time! (Except for when she is in low lighting restaurants with red  lights, just found that out recently.) A friend gave me a little art piece that has the saying,  " While we try to teach our children all about life,  our children teach us what life is all about." Just Perfect. My grandfather passed a few weeks ago. He was quite a character and will be missed. The whole year I lived in Edwardsville he did not get to see Chloe. He was not walking well and my grandmother smokes in her house. I didn't want to take Chloe there because of her lungs. But a few days before he passed I took Chloe in to see him for a few minutes, and he gave a big smile and talked to her. I am so happy he was able to see her and sad she will not know him. I will have lots of great stories for her though, like how he told me he was just going to call Evan Kevin because he would never remember Evan, and he did the whole time I dated and have been married to Evan.

A plane ride, a birthday and anesthesia

The first birthday came and went, and while I can say, "Wow time flies!" like most parents do at a year old, it also feels more like time stood still quite a bit last year. Like it was frozen, moving through water in slow motion, because there were parts I wanted to speed up and go quickly. And yes, Chloe is technically a year old, but really she is not even close to being like a one year old. So, it was a celebration, how far we have come! But also, I can understand why a lot of preemie parents celebrate coming home day, the day the kids came home from the NICU. I mean, she just had to grow in an artificial belly for a little while! It is hard for me to think of her "living" much of a life while trying to grow in the NICU. Even though she made plenty of friends while there! I am happy as long as Chloe is progressing. Things don't seem to come as naturally to her or easy for her like some full term kids. We had to work on rolling over, working on sitting up, working on crawling.  But then I think about how hard she had to work at surviving... and I think I can cut her some slack with the worry. She has had to fight her way through life at such a young age, the youngest age really! Smile. Today we continued the month of tests, tests, and more test. This time it was the MRI. We knew she had to be put out for this because they need the child to stay very still. What I didn't know until talking with the doctor, was they wanted to intubate her for this. Being traumatized from the last time we went to a hospital and had to have this done, I panicked. Oh dear. The doctor was so calming and he gave me the reasons why and said it was what he would do if it was his child. I had to let go and hope they knew what they were talking about. Two hours later, after Evan and I found a spot outside on the food court just staring into space, they pulled us back and Chloe had taken a bottle of apple juice and was smiling in the nurses arms. Of course she about leaped out of the nurse's arms when Evan and I walked in! She was so sleepy and the doctor wouldn't let her go until she was more awake, so we sat  there and tried to rouse her awake. Clapping, singing, maybe a little bouncing... I so flashed back to when I had my tonsils out when I was eight years old. I was so sleepy and could not wake up for about two days after the surgery. It just wiped me out being under, I would open my eyes and all I wanted to do was sleep. I had the nurse doing everything she could, threatening me that I couldn't leave until I woke up and ate some jello. It was so hard to do, all I wanted to do was sleep and here some nurse was bugging the heck out of me to eat food, food that probably isn't even technically food. So, back to Chloe, she pretty much took the day like a champ. Didn't faze her. Don't forget we had gotten up that morning to fly back from the week visit with my parents. Long day. To sum up the trip home and the birthday party we had for Chloe, fabulous! She dealt with the crowds of friends, and got to see some old NICU friends, such as the little boy elves that posed with Chloe for Christmas in the NICU. It was wonderful to see everyone, have some people finally meet the little one and raise a little money for March of Dimes.
Having a daughter that only eats when she is sleeping can add a certain challenge to the day. Early Intervention is turning out to be a let down in Florida. So much for no kids getting left behind...I guess they wait until you are in school to leave you behind. Anyway Evan and I are looking into an intensive pediatric feeding program. They have these programs all over the country and the research is showing positive results. The doctors and therapists all work together in a program that Chloe would go to everyday for weeks, or months depending on what she would need. I am hoping, maybe this could be the help we need. It might mean Chloe and I would be away from Evan for awhile, but we are desperate, it would be lovely if Chloe wanted to eat. She needs to eat, there is a window for development with her and we are grasping at time. Evan read on one of the sites that having a child with eating issues and on a feeding tube can be more stressful that having a child with many other types of problems or disabilities. Now how they can really measure something like that, I have no idea- but, I do understand it, just a little bit. I don't know how to explain it, but something about not understanding not wanting to eat, when I can't stop eating might have something to do with it! I mean I am kidding a little bit, but it is a little true, having to struggle with a child to eat... I don't know, it can be hard at times. But, we still don't have the feeding tube, and it still could be going that way if we don't get some help. I just think there is little known about these little ones who survive being born so young. There was no set plan, or a lot of answers with the doctors we had in St. Louis, and no set plan or real answers down here either. 

Evan and I decided before Chloe's birthday to both write her a letter every year for her birthday. No format, we could write about whatever we wanted, go in any direction, discuss the year, discuss feelings. I found writing this letter to be therapeutic for myself, just like writing on here. I don't know when we will give them to her, but at some point, she will get them as a gift when she is old enough to want them. While Evan is still working on his letter, he also wrote a song for her birthday that he sang to her. I will have to get all the lyrics at some point, but what I remember it goes on about, "Do you remember when we first met? I sure do, you were so small, when I first held you, you fit inside my shirt. My little car couldn't drive fast enough to get there in time for when you were born, when I heard you were breathing on your own, I lost my own breath..." Anyway, it was really sweet and told a little bit of his story.

And so it goes...

The picture of Chloe is of one of her favorite spots, the hammock. She loves to fall asleep in it and it seems to calm her when she gets a little fussy. Next week, Cystic Fibrosis test on Monday, ultrasound on Tuesday, eye exam on Thursday, somewhere in between fit in feeding therapy, (hopefully) living in an appointment filled life all due to Chloe's eating catastrophe, disaster, tragedy, calamity, those are all the words we could come up with to describe the terrible eating habits of my daughter. Okay, it might be a bit of an exaggeration.  She is actually doing a little bit better and maybe taking 1/3 of a bottle while awake, on good days, when the sun is in the East, while a white bird is flapping his wings near by and it is raining on the West side of Miami. In those conditions she will eat a little while awake. But the other times, we carefully time eating times with sleeping times. She also has been tolerating eating the Yo Baby yogurt that I attempt to feed her everyday. No, but really, I have to give Chloe some credit. She does seem to maybe, swallow some yogurt occasionally. She is really into putting her mouth on a cup. So, I have been trying to help her drink from a big girl cup. She is really good at blowing bubbles this way. It should improve her performance in her water babies class. I did have visions of making Chloe wonderful creations of baby foods. I dreamt of the gourmet cuisines of sweet potato puree with an apple reduction, with banana-avocado swirls. My daughter would have no appreciation for this. It can be difficult, and I find it emotionally hard. I know there are others out there who relate, and have made it passed this stage and in those I give hope that someday this will pass. I really do believe it will. Like I said, I feel she is doing a bit better. Today, Granny Janny, who is in town, gave her a slice of peach. Chloe devoured the juices and seemed to enjoy it! I was very pleased! Busy week, but at least we might have some new information from all these tests! Early Intervention has been a bit of a headache too. It is really too bad that it seems in most of the country there are long waiting lists for children who need help. It seems I had the Cadillac plan in Illinois, and I might have moved down to the Pinto plan in Florida. But we will see, they have snuck me in early for feeding therapy. So anxious for this to start. On to more fun subjects! Chloe is a very determined girl now days (I ask, when has she not been?) But she is determined to get toys way across the rug when she is not crawling yet. She will scoot, roll, crab walk, screech, to get something she wants. Pretty funny. She loves her water babies class at the Y. She is the youngest from her age to 3 years. She really is the only kid who doesn't scream the whole class. We can be singing, "Old Mcdonald had a pool..."and kids are screaming, as we are trying to sing over them. But Chloe just splashes around and really enjoys it, she also is into trying to lick the water. It has been nice having Granny Janny here, I actually had a chance to do something I once took for granted, getting my hair done. We also went to the beach today on Key Biscayne and it was a beautiful day! The water was warm and Chloe for sure digs the ocean. A true beach baby now. Well, the little one has a birthday coming up. It was on this day last year I went into the hospital for the start of the roller coaster ride, but also the start of something so wonderful and hard all at the same time in my life.