Out of your Incubator, Into a crib!

Dear Annie,

Today was exciting! When your daddy and I came to see you, we walked into the room and you were in a CRIB! You were out of your incubator and we were so confused, yet so happy! I don't know how much you like it since you are not a fan of the noise... but, ah! It was SO great to see you with out a lid covering you. You looked so pretty and so cute! As we began to start talking to you and holding your hands, you began to open your eyes. You began to move your arms around and cry. We didn't know what was wrong. The nurse then suctioned out your mouth and nose since you had so many secrections. You stopped crying, you kept your eyes open though. I think you were confused as to where you were because you are so used to your incubator with a lid and with just a crib, you have a lot more to look at. I put a picture up of your dad and I so when you do open your eyes, you can see us:) It was so nice to see you with your eyes open for awhile. It made me so happy and I loved just looking into those baby blues of yours. (video of you: https://www.youtube.com/watch?v=oo3XEyYHQOk&feature=youtu.be)

As far as an update, the tegretol that you have been taking that was helping your episodes and spells is now not helping as much. You've been having around 25 spells each day. Last week, the most you were having was 16. We are just hoping and praying that we can find a medicine that will work much longer and help your episodes and spells to go away fully. I know that's asking a lot, but I know that with Faith, the Lord can do ALL things. Your dad talked to the genetics assistant today and the results for the Stuve-Weidmann test came back negative. But, we still have to send in a much larger genetics test with will be extremely detailed and will not just be using your blood, but mine and your dads. This test takes up to four months. We are hoping and praying that we will be able to get answers. In the test that came back today though, they did see some certain areas that were a little different so we are just hoping for some answers here in the next few months.

Annie, I love you so much. I am so grateful for you and your sweet spirit. I love going up and seeing you every single day at the Hospital. You are such an amazing example to SO many people. Keep fighting sweet little. I have Faith that everything will work out the way it's supposed to and I know with out a doubt that the Lord knows what he is doing and that he loves us very much. I hope you have a wonderful night sweet girl. Sweet dreams. I love you.

Love,

Mommy

New Room, Bathing, and holding you:)

Dear Annie,

It's been five days since I last wrote you. There have been a few changes this past week! First off, they put a poor little I.V. in your head for a couple of days because it was the only place they could find a vain. It was the saddest thing to see. The nurses reassured me that it wasn't painful but I still was very concerned. It made me sad seeing it in your head a wishing they could have done it in at least your hand or foot. The reason they had to put an I.V. in you is because, your blood pressure was pretty high and they needed to stabilize it. They gave you medicine for a few days to help your blood pressure and it helped! Your blood pressure is just fine and dandy now :)

Your poor little I.V. in your sweet little head.

Even though they had an I.V. in your head, I naturally had to keep putting cute little Girlie Glue Bows in your hair:)

Another change that you had was, they moved you into a different room. I guess they were trying to keep certain children with certain problems in the same room and that happened to be in the room that you were in. So now you are in another room where there is much more noise. Annie, you HATE the noise! You just love that incubator shut where no noise can disrupt your sleep :). Your cute little face has been so much more relaxed this past week since they started giving you the tegretol. The tegretol has definitely been helping your episodes and instead of having 40-70 a day, you're having 20-14 a day which is a HUGE improvement! They have been slowly giving it to you and have been going up on the dose every four days. You're finally at the full dose so they'll be giving you that same dose each day. I just hope and pray that there will be miracles that will happen with you. I pray that this medicine will be able to fully dissolve these episodes and spells of yours. I know that our Heavenly Father is keeping a close eye on you sweet heart. He will never leave you astray.

Last night, your dad and I couldn't get up to see you until later in the evening. We didn't get up to the Hospital until around 10:30pm. Boy was that a good choice! I got to give you a bath and your daddy and I both got to hold you!! Oh the joy that I had to get to hold you! It was the third time that I've been able to hold you and your dad's second. How grateful I was to be able to hold you! You were so relaxed too! I think you love being held by your mommy and daddy:) Before we held you, I gave you a bath. Oh goodness... you were the cutest little thing! Whenever you get bathed, you automatically cross your cute little feet. It is the cutest little thing! We think you are just trying to cover up :) Good job Annie;) Way to be modest!:)

It was such a wonderful evening and I was so blessed to have had the opportunity to give you a little sponge bath and hold you. You are the most beautiful little girl Annie-buds:) I am so grateful for the opportunity and privilege I have to be your mother! You are the perfect little daughter and you are perfect for your dad and I. You are such a blessing and I thank Heavenly Father every day that he sent you down to us. You have been the blessing and example that we needed in our lives. You were the missing piece to our puzzle. You are one strong little fighter. Everyday I am amazed at all of the things you go through. There is no way anyone could go through these struggles and trials that you are going through right now. How grateful I am for your sweet little spirit and for the comfort you bring me. I love you so much Annie. I cannot wait for the day that I can hopefully bring you home! Sleep well my little one. I love you.

Love,

Mommy

Giving you a bath!

You don't seem that happy that I'm scrubbing your sweet little body!

Naked little Annie:)

Your crossed feet!

Sweetest Picture:)

Holding You:)

In love with you and holding you!

Daddy-Daughter Time:)

Still crossing your sweet little feet:)

Nighty Night Annie-Buds:)

Happy First Easter!

Dear Annie,

Happy first Easter yesterday! Wow... it is crazy how fast time is flying! It's almost May! And you're getting bigger! You're almost up to five pounds! You are growing growing growing! It's making mommy very happy!

Well sweet heart... I'm not going to lie, this week has been hard on me. Ever since that meeting last Tuesday with all of the Doctors, I haven't been able to think about much accept for what the doctors told your dad and I. I thought I cried a lot in March... well... I broke the record last week! (I think your dad thinks I'm crazy!) I just want you to know Annie... I love you so much. You have been the biggest blessing in my life. I'm so grateful for the fighter you've been. You have been through so much these past 7 weeks. More than I think any adult could handle. Through tubes down your throat and nose, to I.V's in your hands, feet, and even head. It's so hard for me to see you go through this and I wish I could trade you places. I just pray that you won't be in pain! It's so hard to see my little girl be sad and in pain. Whenever people ask me what they can do for our little family, I just ask them to pray for you. I know so many people are praying for you sweetie. People have been so kind and generous. They love you Annie! They want you to be okay and well! I hope for the same thing too.

The day of the meeting with all of your Doctors, that night I had a dream about you. It was so peaceful. I had a dream that you got to come home. That you were completely fine. You were probably around 2 or 3 years old in my dream and I was so so happy and overwhelmed with the joy that I felt that I had you HOME! And I could take care of my sweet daughter. Oh the hope and faith I have that the dream will become a reality one day! I truly have so much faith and hope Annie!

I feel like sometimes the Doctors are just doing their job. They're not really having the full sympathy they would have if it was their own child. This is nothing against the Doctors, because they're GREAT and have done SO MUCH. But I know being a mother and father is different. We have much hope that things will be okay! And I think we have to have hope and faith! If we didn't, I don't think we would be able to go through this trial. All we can do is rely on our Heavenly Father.

Yesterday was Easter and I thought a lot about our Savior and all he has done and does for us. It's amazing to think that he died not only for all of the sins of the world, but for all of our pains and afflictions. I KNOW that he loves you and I and EVERYONE Annie! He loves YOU Annie! SO SO much! He loved you so much that he wanted you to be sent down here to be an example to the rest of us. He knew that you would help others come back to His presence. You are one of His very special servants down here:). Please always know that you are an incredible little girl. And if you're only down here with us for one more week, or until you're old and gray, I know that you were sent down here for that reason, to help all of us return to our Savior again.

As far as an update, on Friday they started giving you a new medicine to see if it would help with your muscles tensing up, or what we call, your episodes. And guess what, it's helping! Usually you have 30-70 a day and these past couple of days, you've only been having about 13! Miracles are happening with you little one! I know it! I just hope and pray that this medicine will continue helping and that as they up the doses, these episodes may be able to go away all together. The great thing is, is with those fewer episodes you've been having, they've only had to help you with your oxygen for about 4-6 of them each day and your oxygen only goes down to around 75% when usually, we've seen you go down to 4%. And when you go down that low, that scares your mommy, a ton. You turn purple and your lips get bright white. It makes your mommy cry. So I am very glad that this medicine and you're only going down to 60-75%! You're doing great babes! And did I mention you are just little more and more beautiful everyday?! Seriously! I have the cutest little girl! Also, your daddy got to hold you for the very first time last week! It was a very sweet and precious experience and I know that your dad loved holding you and loved being able to hold you for the first time. It was so neat to watch and made me so so happy! I think you liked your daddy holding you, but not as much as you like ME holding you of course ;) I also got to give you a bath for the very first time before your dad held you! It was so much fun to "bathe" you! It's pretty much just getting a wet sponge and scrubbing your body. Nothing like a real bath!

Annie, I love you so much. You have been such a blessing in my life and I am so grateful to see miracles happening and for prayers being answered. I know that we still have a ways to go, but I hope and pray every single day that everything will be okay. Some days are better than others and I know that through it all, you will fight. You sure are amazing. You are my inspiration Annie. I love you my sweet little girl.. Sleep well!

Love,

Mommy

Giving you a bath! <3

Daddy, daughter time :)

Holding mama's finger!

Your dads sweet cousin did his Eagle Project for the patients in the NICU and had your name on the list, he gave you an EXTRA big Easter basket! Thank you Zach! <3

So relaxed!! Love it!!!

A Father's Perspective

Dear Annie,

I have been waiting for the right moment to write you and I think now is that time.  I can't believe that you have already been with us for more than five weeks!  You are growing bigger and stronger every single day and your mother and I can't seem to get enough of you.  Having you here has been an absolute roller coaster with highs and lows, and as your mom has mentioned multiple times, "each day is different."  Today was one of those days that really challenged our strength and tested our faith.  

Annie, we have been patiently waiting for the highly anticipated meeting with the neonatologists, neurologists, geneticists, nurses, social workers and many more.  We all gathered in a room at the hospital to discuss future procedures to treat your episodes, help improve your breathing, and determine a long-term plan.  I don't think your mom or I were prepared to hear some of the things that were discussed.  We began the conversation talking about how your episodes have not improved with some of the medication that they thought would help.  We then continued to talk about the possibility of a tracheotomy that would help to "secure" your airway and would help with developmental progress.  The doctors were telling us things what we already knew, and I could tell they were trying to tell us something without directly saying the words.  It wasn't until about 15 minutes into the conversation that it hit me as to why were really there.  Even though it wasn't literally said, the group had called the meeting to tell us that we should start to consider what we would be willing to do to sustain your life and to help us understand that if life was sustained what that would mean for your quality of life. If it is confirmed that you have Stuve-Wiedemann, not only is it rare, there only being 25 recorded cases. But most cases don't live past the age of one, due to respiratory problems. And even if they do, the quality of life is minimized.  Annie, you have no idea how hard this is being your dad and having to hear something like that.  I want to assure you that your mother and I will exhaust all possibilities to have you here with us on this earth, and as your dad, there isn't another option.  

Before making any long-term decisions we want to know more about you and your future my sweet girl.  In the short term, we will continue a safe path to help treat your current episodes.  Your mom was inspired when she told me that your episodes only got worse when they put in the smaller breathing tube, so we're going to have them put a larger breathing tube back in.  The nurses agreed that you have outgrown your smaller breathing tube, told ya you were getting bigger ;) We will see if that will help the severity of your episodes.  We have also ordered for a large genetics test that will hopefully help us determine what particular syndrome you may have.  This test will include testing the genes historically associated with Freeman-Sheldon Syndrome, Schwartz-Jampel Syndrome, and Stuve-Wieddeman Syndrome.  The test could take as little as 2 weeks when testing specific genes or 4 months when testing the entire genetic strand.  We hope and pray that this test will give us more answers about how we can treat you.  We also concluded that ordering a tracheotomy isn't the best thing for you right now and both your mother and I feel strongly about that.  We don't think that putting you under any more stress is smart, especially if it's not going to fix these episodes you've been having.  As a group, we agreed to move forward with this plan and evaluate your progress in one months time.  

Annie, I love you with all of my heart.  A father's love for his daughter is pure and complete, I didn't know this until now, thank you for teaching me this.  You have already taught me so much about what life truly means and you have only been on this earth a little over 5 weeks.  I have been constant and calm through this process (sometimes it drives your mom crazy as to why I am so calm).  I think the reason why I am at such peace, is because of my knowledge of God's plan and understanding with clarity the true meaning of this life.  I have comfort in my knowledge that God lives, He is all knowing from the beginning to the end, He knows me and our situation, and even though my plan may not be His plan, it will all work out the way that it is supposed to.  This basic knowledge gives me great peace.  I have had multiple people asking me how I'm handling this the way that I am and the truth is, I can't take the credit for that.  I have a pure knowledge and testimony of prayer and fasting.  I have never felt stronger than I do now because of those that are praying on our behalf.  I am eternally grateful for those that have offered their thoughts, prayers, support, and charity, we truly couldn't be doing what we're doing without them!  I know that I will not receive all of the answers as to "why" we're going through this together but I have learned some things.

I have been striving to understand what I need to learn from this very unique situation and I wanted to share that with you, my sweet girl so you can read it some day.  I know without a doubt there is a divine purpose behind what is going on.  Annie, you have touched so many lives and you haven't even moved more than a foot from your Incubator.  You are an inspiring story to many. People that we know, and people that we don't know.  You have inspired people to have more hope.  You have helped people have more faith.  You have caused people to have more love and compassion.  You have taught people to be humble and meek.  You have shown people what true love is.  You have done a great work in such a short amount of time.  Knowing what I know now, I would choose to go through this 100 times over if it meant that more people would find a way back to their Heavenly Father.  I was talking about this with my Mission President and he reminded me of the passage in John 9 that talks about how Jesus heals a man that was born blind.  When they passed the man, Jesus' disciples asked who had sinned, the man or his parents.  In verse 3 Jesus explains, "...Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him." Jesus went on to manifest the power of God and healed this man.  I strongly believe that God is using you to manifest his power and to work miracles, some we can see, and some we cannot.  You have been, and will continue to be a miracle for many.  I have faith in that!  

  

Although I have been constant and calm through out this process, that doesn't mean I don't get scared.  In fact Annie, I'll tell you a secret but you can't tell anyone, k?  I have been calm through out this process with the exception of a couple times.  It wasn't until today that was fearful.  I am terrified of the day that I have to decide FOR you what "quality of life" is. I hope your mother and I never have to be the ones to make that decision.  We want the absolute best for you Annie and we will do whatever it takes to bring you home so we can live a long and fruitful life together.  I love seeing you as much as I possibly can, even though it's hard seeing you in the situation you're in.  I pray for you night and day and am faithful that ALL will be okay.  Until the next time I see you, I love you sweet Annie, you are my inspiration. 

Love,

Dad

Hard Day for Annie Girl...

Dear Annie,

Not too much has happened these past few days! But you are up to 4 lbs 12 oz! Although, when I talked to the nurse tonight, she told me that you lost weight today.. 1 ounce. We need you to keep growing babes! We are having a meeting tomorrow with all of the Doctors and will be getting a lot of answers from that! Including when we will be scheduling your Tracheotomy.

Things that have changed is, they made new splints for your cute little feet to align straight and guess what? They're HOT PINK! How cute is that?! We call them your "accessories". You have quite a few "accessories" for your cute little feet and hands:) Even though I know you do not like them, I know that they will help! But it breaks my heart when you try to fight them off. They also tried giving you a binky even though you already have a tube down your mouth, they managed to get it in your mouth. You didn't suck on it, you just held it in your mouth and then after a while, you got sick of it and spit it out! Haha.

Today you had quite a rough day... You cried for about thirty minutes straight. You were so calm and you were holding my hand and out of the blue, you opened your eyes and started balling. The hard and sad part is, I can't hear you cry because of your breathing tube. So all I see are tears rushing out of your eyes and down your sweet little cheeks. It makes mama so sad every time it happens. I could tell you were in pain and I wished I could take that pain away from you. It kills me watching you in pain and the doctors, nurses, and even I don't know what's wrong. We tried everything from changing your diaper, to repositioning you. We finally gave you some Tylenol and Ativan which calmed you down after thirty minutes. The whole entire time I just held your hands and as you were squeezing onto my finger, my chin just trembled as I wanted you to be okay. Your sweet little eyes were open and you were staring into my eyes and I know you knew who I was. As we both had tears in our eyes, we just looked at each other; you in pain, and me in pain because I couldn't take yours away. How hard it is for me to see you like that. I always say I wish I knew I could read your mind so I could help you!

Annie, as I was with you today in the hospital, I realized how really blessed I am to have you. You are such an amazing example to me and if I got to go back in time, I wouldn't change ANYTHING. You are perfect in every way and you are the example I need in my life to return to my Heavenly Father one day. I know that up in Heaven, you just wanted a body, you didn't care if it was imperfect. You just wanted to get a body so you could one day, you could have a perfect body and be with your family for eternity. I love the scripture in Enos 1:27 which says, 

"And I soon go to the place of my ^arest, which is with my Redeemer; for I know that in him I shall ^brest. And I rejoice in the day when my ^cmortal shall put on ^dimmortality, and shall stand before him; then shall I see his face with pleasure, and he will say unto me: Come unto me, ye blessed, there is a place prepared for you in the ^emansions of my Father. Amen."

I think of you when I read that. I know that will be you one day and you will be going straight to the Celestial Kingdom and our Heavenly Father will gladly invite you in. You loved the plan that our Heavenly Father had in store for us and you wanted a body so bad that you chose the one that you have. How great of an example you are to everyone. You are doing so much work just laying in that incubator than anyone could ever could do!

Everyone is praying for you sweet heart! You are amazing. You are the most amazing and strong little girl. You really are a fighter. I pray every day that you will keep fighting and if it is our Heavenly Fathers will, that miracles will happen. I love you so much my sweet Annie Girl! Keep growing, keep fighting, know that I love you. Sweet dreams my little one.

Love,

Mommy

Attempting to suck on your binky!

Sweetest thing :)

The Brace for your little feet!

Wide Eyed Girl! :)

Your sweet little hand<3

Trying to dress you in premie clothing... Still WAY too big on you! haha.

Best Friends :)

Kisses for my girl:)

Families are Forever:)

You are BEAUTIFUL!

Sleep Sound:)

What we haven't told people...

Dear Annie,

This past month your dad and I haven't really explained fully to people what exactly is going on with you. A lot of people just think that you were two months early and a premature baby. But Annie, as hard as it is for me to publicly tell people has been hard. But as your dad and I spoke last night driving home from the Hospital, we asked ourselves, "Why hide what we're going through? Why hide you?!" You are perfect in our eyes and are SO special! So... Here it is.

Annie, when you were born, you came out blue. You weren't breathing at all. The doctors rushed you quickly into another room where they could entubate you. You were a very difficult entubation because your airway was so small. As the doctors starting examining you, they realized that you had many muscle contractions through your hands, arms, feet and legs. They also saw that your jaw was set back further than normal and your mouth was smaller. They began to diagnose you with a syndrome called "Freeman Sheldon Syndrome" (http://ghr.nlm.nih.gov/condition/freeman-sheldon-syndrome). When we started researching about it, it definitely described you but we still needed to do some genetic testing to get a full diagnosis. Well, a couple of weeks ago, they came back with it being negative which was a little hard to hear because we knew that you having that syndrome, it wasn't anything to do with mine or your dad's genes, and if it did, only one of us carried that gene. So knowing that it came back negative scared us to thinking it could be something else and we wouldn't be able to have anymore children. The decided to do a skeletal survey on you where they check all of your bones, etc. They also sent in another genetic test for Freeman Sheldon and it also came back negative. We knew we were back to an empty board. Until last night...

Last night when we came to visit you, we met a neurology/muscular doctor. She did an EMG test on you which is a test in your muscles. Ever since you were born, you have been doing these rhythmic movements that have been quite questionable to everyone; including Doctors who have worked for many years. As they thought they were seizures, it has already been confirmed through testing and medicine that they are not. But after you do those motions, you tense up and stop breathing, turn purple and your oxygen goes down very low. After you begin to relax, you start breathing very heavy to make up for the time you weren't breathing. This is why it is SO important for you to have a breathing tube because when you have these episodes (which you have very often, about 7-10 times per hour).

So this EMG test was going to help see what your muscles do when you have these episodes. The doctor told us what she thought and what would change a lot of things. She told us that she was most certain the syndrome you have is called "Shwartz-Jampel Syndrome type 2" or "Stuve Wiedemann Syndrome" (http://rarediseases.info.nih.gov/gard/5045/stuve-wiedemann-syndrome/resources/1). It too has many of the physical features Freeman Sheldon has: Contracted hands, arms, feet, and legs, and certain facial features. The difference about this syndrome, is that it is more of a muscular disorder which causes the muscles to tense up for no reason (which is what you do). This can be very scary because if you aren't on a ventilator when you have those episodes, you probably wouldn't survive.

The problem with this syndrome though, is it means your daddy and I both carry the same gene that is carried in Shwartz-Jampel. This means that your daddy and I... We probably won't be able to have anymore kids. Now, this doesn't mean that you will be an only child sweetheart! It just means we will have to adopt! It definitely is something that your dad and I NEVER thought would happen and it saddens our hearts so much thinking we can't create anymore beautiful children like you! But off course, we will love WHOEVER is our child. If he/she is from Africa, Asia, America, etc. We will LOVE them just as much as we love you! And Annie, your dad and I are SO grateful for you! I am so grateful and blessed that Heavenly Father trusted your dad and I so much that he would have sent someone as special as you to us! We are so so lucky and blessed to have you!

Annie, you are amazing. You are perfect. And even though there are many times when things are hard, I think to myself, "Heavenly Father knows what he is doing!" And it's true, he will never lead us astray sweetheart! He will ALWAYS be with us! We just have to have Faith and Hope in all things! I am so glad your dad and I had you! You have been the example SO many people have needed in their lives. You are changing so many peoples' lives. You are such a strong daughter of God. And as you will go through many struggles, I know you will always be strong, steadfast and immovable.

Today they made new splints for your hands to help open them. The doctor talked to me today and said they will be planning on sometime next week to put a trach in. They have to be very careful with putting you under anesthesia though, because with Shwartz-Jampel, going under anesthesia could cause death because of your muscles not responding to it. But as long as they know that, they can make sure they give you the correct type. It still scares me a ton and I know that day next week, I will be a wreck. Tomorrow, I am meeting to talk with a neurologist more about this syndrome they're thinking it is. They're going to be sending in a genetics test and speak to doctors in Germany because they're more familiar with this syndrome there.

Annie, it may not be Shwarts-Jampel. Everyday is a new day. But your dad and I don't want to hold anything back anymore. We want to share your story with everyone. We want people to hear what an amazing little baby you are! We want people to know what your dad and I are going through. We want to be able to uplift people. But mostly, we just want you to be okay. We want you to grow up happy, healthy and have a normal life. And I know all of those things are possible if it is the Lords will. I love you sweetie with ALL of my heart! I cannot wait for you to be home and your dad and I can raise you and be parents to you! We love you so so soooo much! I hope you sleep well tonight Annie. I love you.

Love,

Mommy

Um... I'm a little obsessed with the OUTFITS they're putting on you now!

With your favorite... Daddy :)

Changing your diaper! :)

Oh how much I love you..!

AH! I can't get enough!

Just comfy cozy:)

Your starting to get RED HAIR like your daddy! :)

Happy 1 month!

Dear Annie,

Happy one month Birthday! That was a quick month full of many emotions! But how grateful I am for you to be here!

This weekend was General Conference for the church. And I have to say sweetheart, I prayed and prayed for comfort of the talks by our beloved prophet and leaders to teach me what I need to hear in my life right now. So many answers were given to me. Many talking about comfort and how there can be situations in life where we make not understand why things are happening to us but that we should be thankful and have an "attitude of gratitude" in tough situations. How grateful I am for you! You have been a wonderful blessing.

Yesterday as your dad and I were heading up to my parents cabin, I told your dad that these past few days I kept getting a certain feeling. I kept feeling like maybe you were sent down here not just for your daddy and I but mostly for your little brothers and sisters. Annie, YOU are going to be such a blessing to our family. You are going to keep your brothers and sisters strong in the Gospel. There will be times they will have to defend you- and I know that because of you and your sweet, and perfect spirit, they will be such strong members of the church with beautiful testimonies because of you. I have always been worried about the way your dad and I would raise our children. But I know that you will always be the example in our family and keep us going in the direction our Heavenly Father. How grateful I am that you were sent to your dad and me. You are such a wonderful and special daughter of God. And I know that through out your life, you will touch many peoples lives.

There hasn't been much change these past few days in the NICU. You still have been having your episodes where you start moving your arms and legs, tense up, stop breathing, and then start breathing very fast. As we thought these may have been seizures last week, they officially confirmed that they are not. A muscular doctor will be coming in this week to do an EMG on you. Which is a muscular test to see if these motions and contractures that you have are muscle spasms, or something to do both with your brain and muscles. We are hoping and praying that we will get SOME type of answers this week! As far as putting a trach in you, it probably won't happen for a couple of more weeks. But hopefully/maybe this muscular doctor will be able to find something and know how to cure it! Even though that's very very slim, I still have HOPE!

Holding your "batons" to stretch out those hands and fingers of yours!

:)

Daddy comforting you:)

Eyes wide open!:)

The cute people put a "Happy 1 Month Birthday" sign on the wall for you!

Sweetheart, I love you so much. I truly pray for you all of the time. And I know so many people pray for you. I hope you keep growing healthy and strong so that someday you may be able to come home to your mommy and daddy. We both love you so much and are so grateful and blessed to have you in our lives. You have taught us love, gratitude, to be selfless, happiness, and so much more! I can't wait to see you tomorrow because the nurse said she put an actual OUTFIT on you which is a FIRST! I bet you look adorable! I love you sweetheart! Sleep well!

Love,

Mommy