>>SHE'S STANDING!!!

This is a HUGE deal.  I am so very proud of my little darling!!!

>>PWS AWARENESS MONTH - QUESTIONS

One last question to answer before the month is over....."Did you know Clover had PWS before she was born, and if so, were you hesitant on continuing with the adoption?"

I know this is something a lot of people wonder. No, we did not know that Clover would be born with PWS. We started the adoption process pretty early in the pregnancy, and signed the adoption paperwork when Clover was two days old. Clover was diagnosed with Prader-Willi Syndrome one month later.

When people find out Clover has PWS and also that she is adopted, their next question is usually, “did you know?” And when we say “no” their entire expression changes and it’s like they feel bad for us. As if we got “stuck” with this child that has a lot of medical problems. As if we didn’t get what we bargained for.

The truth is, we got WAY MORE than we bargained for. Clover is everything and a whole bunch more than we could have ever dreamed of. Anyone who has ever met Clover knows she is something pretty spectacular.

Clover captured my heart immediately. I loved Clover before she was even born, but when I first met her, and held her for the first time, that love I had for her magnified by a million…trillion…gazillion. My heart literally overflowed with love for her. I knew she was meant for us….. I truly believe with all my heart that we needed Clover, and Clover needed us, and she needed Henry and Henry needed her. We all needed each other. Looking back, I can see how every little (and big) thing fell into place in our lives exactly like it needed to so that I was one day able to meet Clover’s birth mom….and eventually welcome Clover into our lives.

I can’t imagine my life without Clover. PWS is just something she has….it’s not who she is. It does not define her. I’m thankful every day to be blessed with her. I would adopt her over again...and again and again!

Thank you SO MUCH for all of your questions this month. Thank you for letting me flood your newsfeed with information about PWS and our family. Thank you for joining in on raising awareness and working towards a cure for Prader-Willi Syndrome. Thank you for your kind words and your love and generosity.

>>PWS AWARENESS MONTH - QUESTIONS

Today I will be answering questions from two of my good friends. Lynsey asked, “Is PWS genetic? I had never heard of it before Clover, is it super rare?” and Stephanie asked a similar question, “Is PWS genetic? Would her birth parents have had any inclination that she might have it?”

PWS is a genetic disorder, in that it involves genes, however, it’s not necessarily hereditary nor does it run in a family (in most cases). 95% of the time, it is a total random occurrence….occurring in 1 out of every 15,000 births. So basically any of us have the same chances of having a child with PWS. However, in very rare cases (less than 5%), PWS is caused by an imprinting error (where the paternal 15th chromosome is present, but for some reason just not working) and that father has a 50/50 chance of having a child with PWS.

While PWS is very rare, it is actually the most common known genetic cause of life-threatening obesity in children. But like you Lynsey, I had never heard of it before the doctors told me they were testing Clover for it. This is why awareness is so important. If people don’t know about it, then they aren’t doing anything to support research. The more people who know, the more likely they are to give money to research and rally together to find a cure! And we desperately need a cure!!!

The next part of the question was if Clover’s birth parents would have known she might be born with PWS. No, there is no way they would have known. Her birth mom had a pretty uneventful pregnancy, and just like any expecting parent, we were all hoping for (and expecting) a healthy baby. We were all surprised about the diagnosis of Prader-Willi Syndrome (as are most families). There really isn't any clue or main symptom during pregnancy that screams, PRADER WILLI SYNDROME. Most families don't know anything is wrong until the baby is born and they are all just as shocked to learn about PWS. While there are some similar symptoms that moms experience during pregnancy (more amniotic fluid than normal and less fetal movement), none of these symptoms would make any doctor or parent think of PWS. Also, most PWS babies are born via c-section. They don't handle labor well and sometimes this can be the first real sign that something may be wrong with the baby. 

>>PWS AWARENESS MONTH - QUESTIONS

This question comes from my friend, Jill.  She asked,"Does PWS have any type of spectrum?"

Yes, PWS is a spectrum disorder and symptoms vary in severity and occurrence among individuals. While there are many similarities in individuals with PWS, there are also many differences and many degrees in the severity of symptoms (some mild, some severe). Some babies require oxygen, some don’t, some babies/kids/adults have sleep apnea, some don’t, some kids walk at 18 months, others don’t walk until they’re 4 years old, some kids really struggle with behavior issues, others don’t, some are major food seekers, others not so much. Some kids with PWS are more prone to seizures, and many have other disorders they are diagnosed with on top of PWS, such as OCD, autism and speech disorders.

I honestly don’t know where Clover is on the spectrum. I do feel like her low muscle tone is on the severe side. However, she is very smart and witty. She does have sleep apnea, but it seems to be improving as she continues to get stronger. We have been fortunate to not have to deal with seizures (yet), but Clover does seem to have some OCD tendencies where she will get “stuck” on something….usually playing with a tag on a blanket or a piece of string, etc. She could sit there for over an hour just zoning out playing with a tag in her fingers….and if I try to take it away, she throws a fit. I’ve heard similar stories with other young PWS kids. There have been times I have been worried about her behavior, but it’s hard to tell if it’s a typical toddler tantrum, or something more. I try not to read into things too much, but that is definitely easier said than done.

For many symptoms, we just won’t know how they will affect Clover until they present themselves…or not. I don’t know if she’ll be a food seeker. I’m not sure how she will do in school. I don’t know when she will hit the “hunger” phase. For now, I just try to give her all that she needs to be able to reach her full potential and hope (and pray really hard) for the best!!

>>PWS AWARENESS MONTH - QUESTIONS

Today's questions is from my good friend, Jill. She asked, "As you watch Clover and Henry grow up side-by-side, what are the day-to-day differences between them?"

When Clover was first born and in the NICU for two months, she was very, very floppy. She rarely moved, she never cried, and she only opened her eyes a handful of times. When Henry was born, I heard him cry right away. I remember holding him on my chest and he lifted his head clear up off of my body. I was absolutely, completely amazed! I think in my mind I didn't think babies could do that.....after all, Clover was 2 months old and still not lifting her head even an inch. So this was the first, real difference I noticed between the two of them. This and also their eating abilities. Since Henry was a preemie, he was fed through a feeding tube for 2 weeks, but after that, he LOVED his bottle and drank it right up, and often times even wanted more. Clover was so weak, she couldn't even eat from her bottle. We would try and try to feed her, but it was just too hard to suck and she would just get too tired. She was fed through her feeding tube for over a year.

Henry started walking at 10 months old, and now at 18 months old, he is RUNNING all over the place. He is climbing up on things, walking backwards, balancing on one leg, etc. At 20 months old, Clover is just starting to figure out how to army crawl, but after just a couple of pulls, she is worn out and resorts to rolling instead. She is still bearing very little weight on her legs. Their gross motor development still seems to be the biggest difference between them.

As far as day-to-day stuff, Clover gets a growth hormone shot every night before bed. This is an actual shot (with a needle) that we have to give her every day (I never imagined I would ever be able to give anyone a shot….let alone my own baby). She also gets several medications a day and is hooked up to oxygen at night. So, her nightly routine is a bit different than Henry’s. After shots, medicine and a bottle, I can put Clover right in her crib and she is totally fine with going to sleep. She has slept through the night entirely since the day she was born. Henry is not so easy. We change him, get him in his pj’s, he has his bottle, and when HE is ready, I can put him in his crib….but it often requires another diaper change, more milk in his bottle, running around, a story, hugs, more bottle, etc before he is okay with going to bed. And even then, he often wakes back up after a couple hours and wants something (usually a diaper change).

Clover also gets therapy three times a week.  On Tuesday she gets occupational therapy, Wednesdays is speech therapy and Thursdays she gets physical therapy.  Luckily, all three of our therapists are great and include Henry as much as they can.  They let him dig through their bags of toys and allow him to join in on all the therapy fun.


Their little personalities are both very different. Clover is very social (although she is starting to get a little more shy at first, but warms up quickly). She waves at everyone, yells at people from across the room, loves to interact with others, etc. She wants to be where the people are! Henry is more reserved, he is fine to just play with his toys and not really care what other people are doing. He likes to watch tv or do an activity (build blocks, color, etc), rather than be with people (he totally takes after me!). If we are sitting in a room with a bunch of people, Henry doesn’t want to sit on my lap….he wants to get down and wander around and explore. Clover on the other hand, she wants to be right up on my lap and in on the conversation with everyone. Who knows, maybe if Clover could walk, she would be out exploring too???

These are all the biggest differences I can think of. Other things include food and eating….we can’t eat in front of Clover or she goes crazy. Henry usually couldn't care less about the food. Also Henry can eat many foods that Clover can’t (or shouldn’t) eat.

Thanks so much for your question, Jill!  This was kind of a hard one to answer. We always notice their differences throughout the day, but when I had to actually list them and write them down, it was a lot harder than I thought it would be. Hopefully I answered it well enough!

>>PWS AWARENESS MONTH - QUESTIONS

Today's question (from sweet Heather) is, "What benefits have you seen from switching to paleo...do you notice a difference?"

There are many different approaches families take when it comes to feeding their PWS child. In the beginning, I assumed it was all just about the calories....and that Clover would be restricted to 600-700 calories per day for the rest of her life. The thought of that devastated me.

Then as I got more involved in the PWS community, I started learning more about what others were doing and what they have found to work for their kids. I have learned that individuals with PWS typically do not do well with carbs and sugar....their bodies are not able to use them appropriately. Instead of using them for energy, their body just stores them as fat. I had heard from other parents about how well their kids were doing on low carb diets and I knew that's what I wanted to do with Clover. Also, if their carbs are restricted, they can often eat more calories....that was a big selling point for me too.

So to answer the question, yes, I have noticed a difference. When Clover eats too many carbs (which happens when I am too lazy or don't plan ahead enough and she ends up getting a sandwich for lunch or pizza or spaghetti, etc), she is more cranky, irritable and tired. This also happens if she gets too much sugar. She also seems to demand more food throughout the day.

When she is eating low carb, grain free type foods, she seems to be more alert and more like her happy, chipper self. I should also point out that while I typically call our diet "paleo" I still include dairy such as milk, cheese and yogurt. I still have a long ways to go when it comes to feeding her better. I stress over it daily....with every meal and snack. It is something that definitely does not come naturally to me as I have always been a picky, not-eat-your-veggies type of girl. I am a horrible cook (seriously, I pretty much mess up every recipe I try) and I love bread and all things carbs....so that has been tricky. However, I notice a difference in my own overall health when I try to eat like Clover. I feel better and more alert too!

As a side note, there have actually been some parents report that even though their kids are in the "hunger" phase of PWS, they seem to feel more satisfied and have less food-seeking behaviors when they stick to a very low carb, grain free, low sugar diet. Of course, every child and every situation is different, but that was very encouraging for me!

 >>Please don't take any part of this post as professional or medical advice.  Every child is different and any change in your child's diet should first be discussed with your child's doctor.  

>>BIRTH MOMS

Thinking of Clover's birth mom tonight....as I often do. She is a very special part of our lives, and will be forever. She is the strongest, most selfless, loving person I know. I will never be able to put into words how thankful I am for her and just how much I truly love her. She gave me the greatest gift in the world and made me a mom. I am so thankful for the relationship we have with her (and Clover's entire birth family!). Clover is a lucky, lucky girl to have so many people who love and adore her so much! Happy Mother's Day to the most amazing person I know....and to all birth mothers everywhere!

>>PWS AWARENESS MONTH - QUESTIONS

Today's question comes from Heather...a very dear friend of mine. She asked, "Does Clover still sleep with oxygen or does she use a mask for sleep apnea?"

Clover still sleeps with oxygen. Her latest sleep study (back in March) still showed obstructive sleep apnea, which is common in people with PWS. Her apnea has improved though, so that is good news! She is now down to only 8 apnea episodes an hour (from 16 an hour last October).

It's really not a fun thing to have your child have sleep apnea. I can literally see Clover stop breathing while she is sleeping. It can be disturbing to watch! Luckily, we have a pulse ox machine that we hook Clover up to each night. This monitors his oxygen levels and heartrate. So, if she desats in the night (meaning her oxygen levels get too low), an alarm sounds. This gives me so much peace of mind at night....it's just nice to know that if anything were to happen with her in the night, the alarm would wake me up.

One thing you might not realize about having a child on oxygen at night is that they do NOT like to keep the nasal cannula in their nose....so they are pulling it out all night long. So....what happens when Clover pulls out her oxygen? She usually desats, then the alarm goes off, then I know she's pulled her oxygen off. Some nights she will do great and leave it on all night!! Other nights she pulls it off every hour....those are very long nights!

I'm not sure how much longer Clover will need to wear oxygen at night. It's possible that in the future, the doctors will switch her to a bi-pap mask. Only time will tell I guess. I'm hoping that she continues to get stronger and that her sleep apnea goes away!!

>>PWS AWARENESS MONTH - QUESTIONS

On behalf of Prader-Willi Syndrome Awareness Month, I am answering your questions about PWS. Today's question is from a very good friend, Jennifer P. She asked, "can you tell if Clover is starting to have the hunger problems yet?"

Clover hasn't reached the "hunger" phase of PWS yet....also known as hyperphagia. For those that don't know, a sad symptom of PWS is a constant feeling of hunger....the kind of hunger you would feel if you haven't eaten for days....and they feel this way even after eating a large meal.

This stage of PWS happens at different times for different kids. Some can enter this stage as young as 2, while others may be 12 years old and still able to feel full. It's one of those thing as a PWS parent that is ALWAYS on your mind....When will this happen? Is she there yet? Oh no, she's acting hungry, is this it?

Even though Clover isn't in the hunger stage yet, she is very, very interested in food....almost to the point that it causes her anxiety. I know a lot of people tell me "oh, all kids her age are like that with food." But, it's different with Clover. Her brain simply works differently. We can't have any food left out on the cupboards or on the table, and we most definitely can never eat in front of Clover unless she is eating too. Sometimes even the presence of food on the table during dinner causes her too much stress (even if she already has food on her tray).

Everyday I hope and pray that a cure is found before Clover ever has to feel like she is starving! It sounds mean to tell a hungry child that they can't eat, but that is simply the reality of PWS. We have to protect them. For those kids in the hyperphagia stage, if they are left unattended, they can literally eat themselves to death....and what that means is that they eat to the point that their stomach ruptures. It is a very scary and real thing. 

>>PWS AWARENESS MONTH - QUESTIONS

As part of Prader-Willi Syndrome Awareness Month, I encouraged my facebook friends to ask me their questions regarding PWS.  Sometimes it feels uncomfortable to ask the questions we have about people who might be "different."  We worry about offending them or seeming insensitive.  The truth is, I love when people ask questions about Clover and PWS.  It's already lonely enough having a child with special needs, but when people don't want to talk to you or get to know you or your child, it can seem all the more lonely.  I always, always appreciate questions.....it makes me feel that you  really care and want to understand where we're coming from....or why we do what we do....or worry about the things we worry about.

I will share the questions I received on facebook and my answers here on the blog.

The first question came from my awesome cousin, Emily. She asked, "What is the whole prognosis for precious children with PWS?"

This is a tough question to answer. To be honest, it's hard to know what the future holds for Clover. And I don't mean that in a negative or depressing way. Kids these days are being diagnosed with PWS at such an early age (Clover was one month old, but others are even diagnosed within a few days of birth). Because of the early diagnosis, kids are starting growth hormone right away, they are starting therapy right away, and good, healthy eating habits are being established almost immediately. With all of these things in place, the sky is seriously the limit for our kids. Clover will crawl, eventually, and she will walk, eventually. She will also, run, play with friends, and maybe even ride a 2-wheel bike one day (if not, no biggie!).

The severity of symptoms differs from kid to kid, and different stages happen at different ages. For example, some kids experience the "hunger" phase at age 4....while others it may not happen until age 12. Some families lock their fridge and cabinets and others don't. We don't know what we will do because we are simply not there yet and don't know what will work best for Clover and our family.

IQ varies from kid to kid. Some kids are in resources classes at school, while others are in a regular classroom, with or without an aid. Some struggle with behavior issues more than others. Some adults are able to live a little more independently than others (I don't know that any PWS adult truly lives on their own??). Some adults live at home with their families, while others live in group homes. I have one PWS friend who lives with her boyfriend in a separate part of the family home. Some kids go to college, some don't. I also have a friend who has a daughter with PWS who has her driver's license!

Most individuals with PWS are infertile, however, not all (I have heard of some PWS women having kids). Life expectancy can be normal if weight and other health factors are controlled.

So as you can see....it's really hard to know exactly what Clover will be able to do and what things might be more of a challenge. It's all just a wait and see type thing. We chose to just hope for the very best and to provide her with all of the supports possible so she can live to her full potential!   

>>CLOVER

This little darling is 20 months old today. I can't believe it!! It seems like just yesterday we were anxiously driving to the hospital to meet her for the first time....and now in just a few short months she will be TWO!! Love this girlie to pieces!

>>DENVER TRIP

Every three to six months, we make a trip to Denver Children's Hospital to visit with different specialists for Clover.  This trip we decided it might be better for Curtis and Henry to stay home and for just us girls to make the trip.  I missed my boys terribly, but I also had some great bonding time with my little Clover.

We headed out Wednesday afternoon and she had a sleep study that night.  This was our most successful study yet (it was her third one)!  She didn't freak out when they attached the million wires to her body and she actually slept pretty well throughout the night.  The results of the study were also better than last.  Her apnea episodes decreased from 16 to 8 per hour and her overall oxygen saturation was higher.  I think last time her average was 88 and this time it was somewhere in the 90s. I can't remember??  She still needs to wear oxygen at night to keep her levels in the higher 90s.  I'm really hoping one day we will be able to ditch the nightly oxygen.

    
The next day she had a swallow study to make sure she is able to safely swallow liquids without silently aspirating.  Results came back showing some mild trace of aspiration, but the doctors weren't too concerned.  For the most part, she is able to protect her airway and the trace aspiration only happened one time when she was using a straw, so for now, we are holding back on the straw drinking.

The next day was a busy day at the PWS clinic.  She saw a total of 8 specialists!!  These clinics, while helpful, are also extremely exhausting....for both me and Clover.  I was frustrated right from the start because the very first doctor she saw was the ENT and he decided he wanted to scope her....which means he had to stick a little probe thing with a camera on the end up her nose and down the back of her throat.  Yeah, that's not at all traumatic for the poor girl!!  So that kind of set the tone for the rest of the day....Clover wanted absolutely nothing to do with anyone else after that....and our day was just getting started.  It was a very long day and emotionally draining.

The clinic ended with me learning that we would be staying one day longer than planned because Clover needed to have her g-tube site surgically closed since it didn't close up on its own.  I knew this was something that needed to be done, but had been dreading it because I did not want Clover to have to be intubated.  It's always a scary thing with any child, but even more so with PWS kids.  They don't handle anesthesia well, they can't have any narcotics for pain and their breathing issues are always a concern.

The surgery went well though and I'm glad we stayed and got it over with.  The hardest part about it all was coming back to see her after surgery and seeing the i.v. in her neck.  I warned them that they would have trouble placing it, and I guess they tried and tried and as a last resort, placed it in her neck.  That whole thing just made me really, really sad.  Poor little thing.  She was pretty upset when she first woke up, but after some cuddling and some apple juice, she was back to her happy self and even smiled and waved at the doctor when he came in to discharge us.

It was SOOO good to finally get back home.  Four days away from Henry and Curtis was WAY too long.  I'm so thankful though that my hubby is so dang awesome that he was able to take such good care of Henry for so long.....completely by himself!!  That man....he's a sexy one!!  



        

>>G-TUBE FREE

So, the great news around here is that Clover finally got her g-tube taken out!!  This has been a long time coming.  There were times I felt like she would never be able to eat and that she would have her feeding tube forever!  We look back to when we were in the NICU and trying to bottle feed her.  We would be SO EXCITED when she would eat 5ml.  I would call Curtis on the phone and be like, "guess how much she ate??!!  FIVE mls!!"  We would think she was doing so awesome!  Now we laugh at how naive we were.  Seriously, 5 ml is 1 teaspoon....we were freaking out about her eating 1 teaspoon!

It was a really hard day for me when she had her g-tube put in.  I was SO worried about her having anestetia and going through a surgery.  I didn't want her to be uncomfortable or be in any kind of pain.

 This picture was taken the morning of her surgery.  I remember just staring at her and crying being so worried and so scared.  Before they took her away, I was holding her and she had her eyes wide open looking at me (which was rare....her eyes were closed most of the time), but I remember just looking into her eyes and being so sad that in a few minutes she was going to be taken away and cut open.  It broke my heart.

They got her all situated in her little isolette and wheeled her off for surgery.

I was a wreck the whole time she was away.  It went by fast though....just 45 minutes later they called and said she was done and that everything went well. 

This photo was taken the day after surgery.  Look at how puffy she is.  Poor little thing! 

It's no secret that I hated Clover's g-tube from the very beginning.  I will admit, I was thankful she had it so she could eat and get all the nutrients she needed, but I struggled with her feeding tube.  It was a constant worry for me.  I didn't want anyone else holding her in fear they would somehow make the tube come out or hurt Clover by putting too much pressure on her tummy.  I didn't like Clover having much "tummy time" in fear of it being uncomfortable for her because of the tube.  It was a lot of work to hook up the feeding tube bag, take it down, clean it out, clean all the tubing, etc...which was done every 3 hours even through the night.  We also had quite a scare with the feeding tube, which led us to several doctor's visits and 2 trips to the ER.  We eventually ended up in Denver where the doctor's finally figured out what was going on.  The tube she had was too big and her stomach was trying to digest it.  This was a very scary time for me and Curtis....more scary and stressful than anyone really knew.  Clover's tummy would get really distended, she wasn't pooping or peeing, she would projectile vomit and her g-tube would get "sucked" into her belly.  I was a complete wreck during the couple weeks this was going on.  I felt very alone because no one could seem to help us.  When the doctors at Denver Children's Hospital finally figured it out and placed her with a much smaller g-tube, I was finally able to breathe again.  That time in our lives was probably one of the most stressful for me since the kids were born. 

I was hoping that Clover would maybe have her g-tube for a few months....6 months at the most.  But it turns out for her, 14 months was the magical age that she would start taking all of her feeds my mouth.  The day her tube came out for good was a glorious, magical day!!

I love kissing and rubbing her bear tummy.  I love that there isn't a big 'ol button in the way.  I love that I can put her on her tummy and not think twice about it.  I love that I can put her in the bath without holding her arms down the whole time so she won't pull her tube out.  I love my little girl and I love that she is g-tube free!!!

>>WORDLESS WEDNESDAY

>>ONE YEAR AGO...

One year ago today I was sitting in the NICU cuddling my darling Clover.  She had just turned one month old.  The doctor walked in and shared some news with me that would forever change my life.  "Clover has Prader Willi Syndrome."  The words came out of her mouth so quickly there was nothing I could do to stop her from saying such an awful thing.  Those words stung my heart and at the same time caused a two thousand pound boulder to drop from the sky right on to my chest.

A year ago today was the hardest day of my life....followed by an equally hard week.  It was a lonely time.  The words Prader Willi Syndrome never left my mind, but I didn't want to talk about it with others either.  At that time, I felt like no one could possibly understand.  Nobody knew what PWS was, and even if I told them, they still didn't really know, nobody could understand the heartbreak I was feeling, no one could understand the fear I had inside me, no one could understand what it felt like to learn your perfect baby has an incurable,  life threatening disorder and there was nothing I could do about it.

I was emotionally exhausted, I was very scared, and I was very, very sad.  (I was also 7 months pregnant).

One minute I was thinking, "okay, we can do this!" followed by a breakdown the next minute asking, "how are we going to do this?"

As time went on, little things would happen that would fill me with hope.  Like the time the therapist said how great it was going to be for Clover to have a little brother to watch and learn from.  Or the time I saw a picture of a little boy with PWS riding on a dolphin during a family vacation.  Or the video I watched of a young girl with PWS walking for the first time.  And meeting other parents just like me who truly understand....whose kids have feeding tubes and oxygen and low tone and a spark in their eyes just like Clover.

I still think about PWS everyday.  It's a part of our lives now and will always be.  And I still have hard times and struggle.  But, I have learned so much this past year and have grown in ways I never knew I could.  Clover has come such a long way too.  She works so hard every day and she has a smile on her face the whole time.  She inspires me and makes me want to be a better person.  I love her so much and am thankful everyday she is a part of our family.

One year ago my heart was broken into a million pieces.  Today, my heart is full and  bursting at its seams.  I am happy and hopeful and very thankful for all that I have.  Today is a good day.

Clover (one month old) with daddy.  

She's had him wrapped around her little finger since the day she was born.

Clover today (13 months old)....and still daddy's little girl.

>>SHE SITS!

Lately I have been feeling a little discouraged with Clover's progress....especially relating to her gross motor development.  Her tone is still very low.  It's really hard to fully understand and get what it is to have low tone until you hold a baby with low tone.  You really have to support everything....trunk, legs, arms, shoulders, etc.  Holding Clover is a totally different experience than holding Henry.

She is still struggling to put any weight on her arms or legs.  When we try to put her into a crawling position, her arms just give out and she can't hold herself up.  Therapy has been pretty hard to watch the past couple of days because I have to sit there and see Clover struggle and get upset and cry and it is just heartbreaking.

Yesterday after a grueling day of therapy, Clover was left completely exhuasted and I was left feeling down and worrying about my sweet girl.

Then this happened....

I am so beyond proud of Clover.  She works so hard and is so amazing.  I want to cry everytime I watch this video because it is such a huge milestone for our little girl.  When she was born and in the NICU, we didn't know if she would ever be able to do this.

Henry was proud of his big sister too.  Wasn't that kiss at the end just adorable.  Love my sweet boy.

These two kids make me so incredibly happy and they teach me SOOOOOO much!

>>ONE

My sweet little Clover is now ONE year old!!  I cannot believe it!  Twelve months has never flown by so quickly in all my life.

I remember the day I got "the call" from Clover's birth mom.  What was just another day at the office quickly turned into one of the best days of my life.  We had been trying for a long time to add a baby to our family and now it was looking like it was soon going to happen.  We were going to adopt a baby!!  I wanted to shout it from the roof top and jump up and down on the couch and share my excitement with everyone.

We didn't know if Clover would be a boy or a girl until she was born.  When the nurse came out with her and announced she was a "she" my eyes filled with tears and I was so thankful to have a daughter.  I instantly fell in love with her.  I loved her before she was born, but when I held her for the first time, I just knew she was meant to be in our family.

God couldn't have blessed us with a more perfect, beautiful baby girl.  

Clover's first year of life has been quite an eventful one.  She had her first plane ride at just 2 days old as she was flown to the NICU in Billings, Montana.  For the next month she was poked and prodded and tested and observed until finally being diagnosed with Prader Willi Syndrome.  She had her first surgery at 5 weeks old when she had a g-tube put in her belly.  She spent 2 months in the NICU, has had 3 emergency room visits, been to Denver Children's Hospital 3 times, has been seen by over 14 different specialists, started physical and occupational therapy at just 2 weeks old, started growth hormone injections, has had 2 sleep studies, diagnosed with severe sleep apnea, moved to a new city, AND became a big sister!  Wow, what a year!!  I'm sure I forgot several events in there too.

Clover works extremely hard at everything she does.  Even though things are hard for her and she tires out so easily, she still has a smile on her face all the time.  She has the cutest, sweetest personality and she inspires me every single day.  I am so, so lucky to be this little girl's mama.

Happy Birthday my darling Clover.  I love you always and forever!

XOXO       

>>DAY 17

Clover has gone a whopping SEVENTEEN days without using her g-tube!!  I am soooo proud of her.  She is such a little rock star!!

>>PWS VIDEO

This is an excellent video about Prader Willi Syndrome.  It will give you a little insight to what Clover has to live with every day.

>>ELEVEN

This little cutie is 11 months old today!   Where has the time gone?  I swear she was just born like 2 days ago.

She loves her some avocado!