Life is Good

Good Morning Friends! It has been a little bit since I have had the time to post anything.

In the last month, we have brought Sophie home from the hospital, moved in to our new home, several doctor appointments, football games for Shane, and just enjoying our life.

Let's begin with Sophie! I am continually amazed at how well my daughter is doing, at how resilient she is. What she has gone through so far, I bet none of us would come out with the happiness and joy that Sophie has! Is it because she is "simple minded"? Possibly, but I choose embrace it!

Every single day, Sophie is doing better and better. She is wanting to stand ALL OF THE TIME, with assistance of course. That is the one thing that makes her the happiest. Sophie is now sitting up by herself. She is still a little wobbly, but she is getting the hang of it. The only thing she hasn't learned is to use her arms to brace herself or to push herself up yet, so it is funny when she gets off balance and falls over with her hands behind her head! Yes, I do let her fall, she needs to learn somehow! Our little miracle has also learned how to pick up her paci and put it in her mouth...this is HUGE! Sophie has visual impairments that are limiting to her. How limiting, we aren't sure but we do know that she doesn't see very well. I am sure you can just imagine the excitement I felt when we were all sitting at dinner and Sophie was in her high chair. She was playing with her toys and all of a sudden she reaches down, picks up her paci, and sticks it in her mouth!! My jaw dropped and I teared up! What an accomplishment.

We did have a little battle with an infection, but with some Keflex it is doing much better. Her incisions looks fantastic, her breast bone is healing, and she is overall....a new Sophie! I still have my sweet sweet baby girl, but she is doing more and more, and always  happy. She has so much more energy, a better appetite (although she is still only 20lbs), and overall, her quality of life seems to be better. All from just closing the ASD hole in her heart!

Shane is adjusting to living in a new house. We love our new place, so much more room and it is a home that I am proud of. Shane didn't want to move because his best friend lived literally down the street from us and they just started walking back and forth to play with one another. Although we are in a different school district, we are keeping Shane in Adrian, as of now! He is struggling with some behavior issues as well as grades. We just had his homeroom switched around because of the quality of kids in his class. The boys mainly. Hopefully we will see things start to improve for Shane both socially and academically. He has a long road to go, but we know he can succeed, if he chooses to. If he chooses not to, we will move him to Madison schools, which is right next door to us!

Shane's football team went undefeated this year. It was a great accomplishment for those boys because they didn't have too many returners for this season. Playing with a new group of kids can sometimes prove to be difficult. Not for these boys. They were unstoppable. It is a little bittersweet knowing that there are a few boys that Shane will never play football with again because of their age difference in school. That for me, is a little sad because I love their mamas!

Dan and I were standing in the kitchen the other day after our new fridge was delivered. We were talking about our new home, the things we have, how well Sophie is doing, and how we have a healthy son, and he looks at me and says, "Life is Good"!

Blessed Beyond Measure

Good evening all! As I am sitting here typing this, I have a daughter in the other room who is sitting in her toddler rocking/recline seat shaking her plastic keys just 6 days after open heart surgery! How awesome is that!

Surgery went very well and recovery is going better than expected. Sophie still has some issues with her pain management, but all in all, she is doing remarkably well. On Friday morning all of the doctors were doing their rounds and one doctor in particular said that she is doing amazing, better than anticipated. I told him I wasn't surprised. After all, Sophie is a pretty big deal! ;)

Sophie 1 hour post op. The nurses tied a ribbon in her hair before we came back to see her!

Sophie's incision is what the surgical team refers to as a cosmetic incision. Dr. Hirsch-Romano made it low enough and small enough so Sophie can wear scoop neck shirts. I am pleased with how thoughtful she was in making her decisions. Not just for the moment, but for the long term.

As for Dan, Shane, and I, we are feeling relief. We are able to breathe again, even if it is just in this moment. We know there are more things to come with her having MWS, but right now, we are thankful for where Sophie is at. Shane was able to make a Hippo that had every single wire, tube, iv in it that Sophie did and it helped him understand what was going on with his sister. We couldn't be happier with U of M Mott's Children's Hospital.

I come before all of you humbled. Through the past couple of weeks Dan and I have had to learn to just say Thank You. Not just thank you for opening my door, or thanks for taking out the trash, but the kind of Thank You that has you all choked up inside, holding back tears, because Thank You doesn't seem like enough. I can't even begin to describe to each and every one of you the outpouring of love and support you all, everyone, has shown my family. We are overwhelmed with it all, in a good way!

Remember how I asked all of you to pray that God would meet our financial needs? Well, let me just tell you how exactly He did that!

 Every single amount of money that came in told us to give thanks to God because He was the one providing and they were so right, He did! We don't have a single financial worry right now with being off with Sophie and I can't tell you how good that feels! Now do you understand how we have had to learn just to say Thank You? Dan and I aren't the type of people who are comfortable with asking for help, so we don't do it. We try to make every happen on our own. We are the type of people that if someone needs help, we will do what we can to make it happen for them. So, to all of you, Thank You!

Sophie is currently in living room, like I said earlier, still clapping her hands and shaking her keys! I just snapped this picture of her just relaxing!

Overwhelmed

Good Morning Friends! The day my family has been dreading is drawing near. It is hard to believe that we are only 1 week and 2 days away from Sophie's surgery. It has been a long time coming but the fact that it is actually here brings up many different thoughts and emotions.

As this day approaches I can see more and more every day the wear it is putting on my husband. As a good friend stated, you can literally see it on Dan's face, so after dinner last night I asked Dan what is main concern with this surgery was. He said that my daughter will die. He said that there is a chance that with them working on her heart that it will stop and the doctors won't be able to get it started again. He then said, if we don't do the surgery my daughter's heart will stop, so either way there is a chance my daughter's heart will stop!

 To most people, or some, they would think that it is a little bit irrational to think of the most extreme circumstance since this surgery that is being performed is the safest and most common heart surgery they perform on kids. To most people they would be concerned for their child, but they wouldn't have the same gut wrenching fear of losing....ANOTHER...child. It isn't like we haven't experienced having a child/children die on us. This is a very real fear for Dan, for Shane, for me. When your son asks you if his sister is going to die, you can tell him No, but it is an empty statement. I honestly don't know. Is it possible, yes! Is it plausible, yes! Is it probable, No! Good thing we threw a wrench in Hood's Three P's!

For those of you who haven't seen a little filer floating around facebook, some of Dan's friends at work have decided they wanted to put on a benefit for Sophie so they are doing a Rock-N-Bowl for her on October 27th. It is amazing how this thing is spreading like wildfire, faster I think! I know that isn't a funny joke with all the fires out west that happened this summer, my apologies! :)  We are so blessed to have so many wonderful people in our lives that want to help Sophie and us as much as they can. It is a different feeling though being on the receiving end of the deal. We are usually the ones helping others. It am not sure it is a feeling I am comfortable with. It doesn't stop there. Other people at Lenawee Stamping are putting on a car wash this Saturday and the proceeds are going to Sophie. Oh, and there is a bake sale the day of her surgery! How are there so many giving people under one work place? I wish I knew!

With all of the people wanting to help, it is becoming a little overwhelming. Dan heard someone say that they could only afford to help him out once. It made him feel like a charity case and he hates that feeling. I just want everyone one to know, we didn't ask for any of this nor did we expect it. All we did is ask for prayers that all of our needs would be met!

Speaking of needs being met. I do have to share with you these blessings we have received since the last time I posted:

I asked for our financial needs to be met during our time off...I received a blessing here!
With buying a house we had to use up most of our savings and I didn't want to touch the rest of it. A large bill was due and since I have been missing a lot of work for Sophie, money was a little tight....I received Sophie's 1st check from Mental Health Authority for the amount we needed! The next day I received $50 for transportation reimbursement for Sophie's doctor appointments! I just wanted to sing His praises!

Also, my post about SSI sucking, well it is true. We were medically approved because they found Sophie to be medically disabled, but we were financially denied. That means, Sophie receives nothing. If anything happens to where we lose our income, we can reapply. I guess I should just quit my job, have 5 more kids, stop being a responsible adult and contributing part of society, and then, just maybe, Sophie will get the help she needs as she gets older.

Whew, that is a lot of information to read above!  Here is a picture to brighten your day!

Prayers for a Friend

Good Morning! I received a message from a dear friend this morning asking for prayer. She is struggling. It is the same struggle I deal with almost on a daily basis. I ask you to remember her in prayer today. Below is the message she sent to me. I am not thankful for the difficulties that our daughters share, but I am thankful we can walk it together! I love you KEC!

"Today I am struggling. With anger. And sorrow. And grief. An acquaintance is having an ultra sound. She will likely find out she is carrying a healthy baby. She is unwed, not even in a committed relationship. She drank heavily through out the beginning of the pregnancy, smoked both cigarettes and pot. Not that I would EVER wish someone's baby be unhealthy. But, it hurts just the same. And I tell you because I know you have those days. I know you understand my pain and the place in my heart that hurts. Please pray for me today, and for the people I have to come into contact with. I am having a difficult time speaking with patience and love."

Let's life her up today!

October 4th

October 4th is the date for Sophie's open heart surgery. It will be performed at U of M by Dr. Hirsch. I hear she is really good, let's hope and pray she is. Sophie will be in the hospital for 7-10 days and she will have a 4-6 week recovery time before she is back to normal.

My emotions:

Out of control
Terrified
Highly emotional
sick to my stomach
Head is throbbing
Can't stop crying
Worried

Other things going on:
Buying a house, closing on the 9th or before! Great timing huh!
Football for Shane
NO vacation time left because I have used it for Sophie's medical appointments/surgeries/hospital stays.

Ways to pray:
Sophie comes out of surgery doing well with no complications before, during, or after the surgery.
Sophie's recovery to be better than they expect.
Pray for all Doctors, Nurses, anesthesiologists, that will come in contact with Sophie.
That our finances are met with the lack of work that will be going on for both Dan and I for a few weeks.
That Shane will deal with his emotions through this as well. I know he is terrified as well.
Comfort for all of us.
Safe travels for those that will be heading to and from the hospital.
Closing on the house goes through without hiccups.

That's all I have for now. Love you!

Room 1517; Our Temporary Home

Good Morning! As I am typing this it is raining outside. It is dark and grey, sort of like how I am feeling inside this morning.

As you know from FB posts, Sophie wasn't doing too well with eating after her surgery. When I thought it was getting better, it wasn't.

Sophie is now at Toledo Children's Hospital, room 1517, because she is dehydrated. The doctor told us that her electrolytes showed sever dehydration. They currently have her on an IV and she can only have clear fluids until later this afternoon, early evening. Then we will see if she will take her formula.

I am at work this morning, just where I want to be...NOT, but we have a family to provide for and this job is what pays our bills, along with Dan's. My grandmother is with Sophie right now and then when Dan wakes up, around 1, he will head up there to be with her until I can get there this evening. I will stay the night again, and then leave from there for work. This will be our temporary home until Sophie decides to eat and her diarrhea subsides.

Yesterday they took stool samples from Sophie. They were testing her for C.diff infection. Sophie's visitors as well as nursers, and myself, had to wear gloves and gowns to even touch her. I am sure it wasn't comforting to Sophie not to even feel her mama's touch! Luckily, the test results came back negative so we don't have to "suit up" anymore.

I just called the hospital and they are working on getting Sophie to eat. She is definitely peeing now so they turned her fluids down. Let's hope and pray that helps her want to eat.

Thanks for all the prayers and concern and love for Sophie and the rest of us. 

Unsuccessful Attempt

Today Sophie was to have her ASD closure performed at Mercy St. Vincent's in Toledo. We arrived at 6 am and at 7:30 we were taken down tot he cath lab.

The ride was all to familiar. I was on the bed with Sophie and heading down the ramp we put our hands in the air like we were riding the roller coasters at Cedar Point. Something we did last year as well. We try to make the best of these situations.

At 8 am Dr. Butto arrived and Sophie had fallen asleep in my arms. My baby girl didn't even cry for food today. He said he was going to go in, do his best, and he would see us when he was finished.

Around 9 a nurse came out and told us that he gained access in through her veins through her legs.

Around 10 she came back out and said that Dr. Butto was taking measurements.

About 10:30 she came out again and said he was attempting to put the device in place.

Not much after 11 she came to get us saying he was finished and that he would talk with us now. We headed back to the lab. We were excited because we really thought that the surgery went so well, no hiccups, and he finished in just over 3 hours.

We go in to the lab and Dr. Butto has a smile on his face. This smile I believe is permanent. It is there with good news and bad. The next thing he said....the hole was too big and he couldn't do it.

Sophie is now going to be having open heart surgery at U of M. We aren't sure when this is going to take place, but it will be soon. The pressure in her lungs is between 60 - 70 and her first surgery, it was around 40 and he thought that was high.

In recovery Sophie didn't wake up too well from the anesthesia. She was really groggy, in pain it seemed, and just not waking up normally. The doctor ordered Morphine. So, Sophie slept and slept and slept. When she finally started to wake up around 3:30 we tried to give her pedalyte, formula and she didn't want any of it. Then she took about 1 ounce of apple juice.

Sophie was still not awake and the really needed her to eat more. Because she wasn't eating they gave Sophie fluids through her iv.

At 6:30 they said as long as we were comfortable we could take her home but that if we weren't they would keep her. By 7 we were out of there.

We have been home about an hour and she has taken 3 ounces of formula. Yay Soph!

I will keep you posted as we take this journey, together!

Signs of Normalcy

Yes, you read correctly! Sophie had her follow up EEG on Friday. This was the first one since they started her on the steroids. It was a 2 hour EEG and then entire time, on and off, I was TELLING God that He needed to make her EEG better this time around. I told Him I couldn't take anymore of these meds or I was going to lose it.

Well, prayers answered. The doctor came in and told me that it was good news and then she showed me Sophie's EEG from July and then this one and it was like night and day. I almost started crying, I was overcome with joy and relief.

Not only was it better, I was told that they even saw signs of normalcy and that was better than expected. We have now began the step down process for her steroids and it is going well. Sophie is still not happy and I was cautioned  that she may not be for about another month. Small improvements every day make it easier to handle.

Sophie also has thursh. One more reason to not like the steroids. Doc. Nuga gave her nystatin. The day I  gave it to her she kind of choked on it and then was horse and wheezy. I just thought a possible cold. Dan asked me to take her in because he was afraid of something worse. So, I did. Once we got there, waited 2 hours, we were seen and then rushed, by ambulance to Toledo Children's. I guess Soph just missed the nurses there. They rushed her in because her O2 level was in the 80's and her heart rate was 160. NOT a  s good combination. We were admitted and they determined it was a "virus"! Right, ok. What they really meant to say was that they didn't know what was really wrong with her. Chest xrays were perfect, heart was good, and there wasn't anything in her throat showing something worse than her thrush. We were sent home on breathing treatments every 4 hours!

We are home. Sophie is cranky and still horse. She sees doc Nuga Friday so hopefully have answers. Sophie is scheduled for August 23rd for heart surgery and here is to believing that nothing gets in the way!

Oh, and I apologize for the spelling error on my last post. I am particular about that but I missed it. Don't be shocked if I missed in this one too, my computer is acting funny!

Where Has My Sweet Gril Gone?

Oh, Presidolone, how I loathe thee! Seriously, I hate this medication. It has taken my sweet little princess and turned her in to the evil step sisters, worse than the evil step sisters on Cinderella! To top it all off, Sophie is teething and is just inconsolable!

Speaking of Sophie, I hear her waking from yet another nap. It seems that all she does is EAT (she has doubled her food intake), sleep, and cry.

On Friday, August 3rd, Sophie and I are headed back to U of M Neurology for another EEG. They are going to see if the steroids are working. Please pray they are! Even if they want to continue her on steroids, I am not going to let it happen. There are other ways of treating it, and if need be, we will take a different course.

Sophie had a follow up at her heart doctor 2 weeks ago and he said that she is extremely close to missing the opportunity to close her ASD with a device. He is scheduling her surgery for August 23rd in hopes that Neuro will sign off on her. If they don't, I am sure we will be at U of M so Sophie can have open heart surgery.

So, I ask this from all of you (because I have a friend that told me I needed to. Since she reads this, I need to listen) please be in prayer in the following ways:

The meds are working and Sophie's EEG has improved. With that, pray that because of the improvement she will be developing more mentally as we move forward.

That we are able to have Sophie's surgery in Toledo on August 23rd using a device. Pray for all involved. The nurses, ALL the doctors, everyone.

Pray for my sanity. I am truly closing in on my wits end. I am not sure how much more I can take of Sophie just being miserable ALL OF THE TIME!

Pray for Dan and I also as we are starting to get pissed off when people update their FB status with FML (F*** My Life) all because they have a flat tire, or they say they are "special ed", or "retarded"  because they did something stupid. Last time I checked Special Ed doesn't mean stupid.  I can tell everyone of a little girl who has had a pretty crappy start to her 16 months of life, yet she still puts a smile on her face, when she's not on steroids that is! :) I guess we just need to let it roll off our shoulders because we know that we just can't fix stupid people!

Also, we go to court on August 13th for Sophie's SSI. We were denied the first time. I believe they are going to deny us again because they think we make too much money. Seriously, too much money? How about the fact that I can't even take my child to a day care center because they don't want the risk that she brings. Or, I can't work a full week of work because I have to take her to several doctor appointments. Funny thing is, they just look at your hourly rate, not the expense you have of living!

Ok, now that I have that off my chest. Thank you all for the support you have shown my family as we are moving along this thing we call life. I am truly blessed to have all of you on Sophie's team, rooting her on, rooting me on. With all of the things we have against us, we have some pretty amazing things going for us as well. 

I love you more than you know!

Go Team Sophie!

Surgery Cancelled....Again!

As you know, we were called to go to U of M on Friday, July 6th for a follow up for Sophie in Neurology. They wanted to do a 2hr. EEG so they could get a better read as to what is happening in Sophie's brain. The results, to say the least, we unexpected. Unexpected because we have been giving her anti-seizure medication and she had been doing well.

Sophie has Hypsarrhythmia. The definition, taken from Wikipedia is below:

Hypsarrhythmia is an abnormal interictal pattern, consisting of high amplitude and irregular waves and spikes in a background of chaotic and disorganized activity seen on electroencephalogram (EEG), frequently encountered in an infant diagnosed with infantile spasms, although it can be found in other conditions. In simpler terms, it is a very chaotic and disorganized brain electrical activity with no recognizable pattern, whereas a normal EEG shows clear separation between each signal and visible pattern.

Exciting, right! This is apparent when Sophie is awake and even more so when she is sleeping. You should see the EEG, it isn't pretty!

So, what do we do from here? Great question! Dr. Dang (works with Dr. Leber) has put Sophie on a HIGH dosage of steroids which is supposed to give her brain back the structure that it needs in order for Sophie to develop mentally and start doing the things she is supposed to, even with MWS. We will revisit in 1 month with another EEG and clinical follow up.

In the meantime, Soph is on this medication 3x a day along with an antibiotic 3x daily every M,W,F as well as medication for acid reflux because her steroids will give her more acid. Just what Sophie needs. Sophie has been more irritable and it has only been 4 days. What we need to watch for is that this medication attacks Sophie's immune system so if you are sick in ANY way, please don't ask to see my child. She absolutely can't be around anyone that is sick, even if it is JUST a runny nose. Just a runny nose to Sophie on this medication can result in much worse for her. This medication can also cause a rare lung infection, which is the reason she is on the antibiotic. 

If you recall, Sophie was on Keppra, which is an anti-seizure medication. The prescription was written by the ER doc at Bixby and we dropped it off immediately at CVS in Adrian. Sophie has been taking this medication for 1 month and on Friday our doctor realized that she has been getting 10x the amount needed!! Needless to say, but I am going to say it anyways, CVS in Adrian has been overdosing my baby for 1 month. They completely messed up her dosage and all they have said is, it happens, we are sorry! Really? WTH? You could have killed my child and all you have to say is "It Happens"? Luckily, for Sophie, this medication is what they consider a "safe" one and all of her levels have come back normal. We currently have to gradually take Sophie off this medication. Sophie has enough going on that is out of everyone's control, the last thing she needs is for someone else to cause issues for her!

With all of this said, Sophie's heart doctor, Dr. Butto, has cancelled her surgery once again. He believes that Neuro has the lead and once this is taken care of we will reschedule her surgery. This pushes Sophie even closer to having Open Heart Surgery because our window of opportunity keeps getting smaller and smaller!

Sorry, this is a lot of information. Once I started, I couldn't stop. Besides Sophie being irritable she is fantastic and she even has her 1st tooth! We were so excited, I mean it has taken her 15 months to get it. We were going to celebrate with Spaghetti, but Sophie didn't want anything to do with anyone! Ah, this is just for a month, right?

July 23rd

Surgery has been rescheduled for July 23rd. Dr. Butto is still going to try and use the device to close the ASD and if successful, we won't have to endure the open heart surgery.

Sophie is amazing. She is so resilient. It is like nothing ever happened and she is happier than ever! The medicine Sophie is on, Keppra, has a 1 in 3 chance of making Sophie extremely irritable. PTL that Sophie wasn't that1....so far. The reason I say so far is because it has only been 2 weeks. 2 weeks isn't a lot of time for that medicine to be in her system.

We just increased Sophie's dosage from 4ML 2x daily to 8ML 2x daily. I am hoping that this increase isn't going to affect her either. Time will tell.

In the mean time, Sophie has started at a new baby sitter. We are truly blessed to have someone with a child that has the same syndrome as Sophie living only 5 minutes away. Cynthia has graciously agreed to watch Little Miss for us. It isn't that our other sitter wasn't good with Sophie, but this is just a better fit for Sophie. Cynthia knows how to work with Sophie in her therapy and what to watch for in regards to seizures. For that, I am thankful.

For Obama Care, I am not thankful! Had to throw that in there.

Sophie spent her early afternoon in a pool with Cynthia, Lukus, and Mattie. Luckily, Cynthia gets my humor when I tell  her that if anything happens to Sophie, she dies! :)

Shane just finished up his regular season of baseball. They will have 1 week off and then go in to a play-off game to determine their ranking. Their ranking isn't so great but Shane played on a team where they were taught to play the game fair and clean, not dirty like some of the others. Shane has turned out to be quite the catcher and we are proud of him. He has taken quite a few hits at home base as well and every time, he just stands right back up. 

Have a wonderful day and stay cool.

Surgery Cancelled

As you know, Sophie was supposed to have her heart surgery done today. Well, things didn't go as planned. My apologies for not letting you all know sooner, but things have been hectic around here and all I have wanted to do it hold Sophie. When I am not holding her I am checking on her every other minute.

I came home from work on Wednesday, the one day I was able to work this week, and Dan said Sophie had been screaming the entire day and refused to sleep. Dan hadn't slept either because our sitter's son had strep and I couldn't send Sophie. Sophie was lying on the floor and she wasn't crying. Dan said she had stopped a few minutes before I came home. I sat on the floor with her and she really didn't seem to care. I noticed her Nystagmus was worse than normal (eyes rapidly moving back and forth) but Sophie also hadn't been the same since her seizure on Saturday.  All of a sudden Sophie just didn't seem responsive and the right side of her body was jerking. Leg and arm. Uncontrollably.  I told Dan something wasn't right. He tried to get her to respond and she wouldn't. Sophie was breathing but it was shallow.

Dan and I rushed her to the ER. Sophie was having a pretty bad seizure. We arrived at the hospital and I demanded they get us in immediately. They complied. Of course it had nothing to do with the fact that there wasn't anyone else around. :) Once they got Sophie to a bed they started the IV in her left arm and it blew. Luckily, there was a nurse there that we had on Saturday and he was able to get the IV on Sophie on his first try. Not heard of with her. He took it and put it in her right arm and he was SO good with her. Talking to her in such a calm, soothing voice. I felt like he truly cared about my child. I so wish I could remember his name.

Once the IV went it the immediately gave Soph adavan and I had already had a call in to her neurologist. By the time the IV went in and the meds started, it had been 25 minutes that Sophie had been seizing. It was the scariest thing I have ever experienced.

We were in the ER for a few hours, surgery was cancelled because she is not stable and Dan and I are terrified that this is going to put Sophie in the running for open heart surgery because they didn't have time to waste with her. We were sent home on Keppra, 2x a day. 4 ML for 2 weeks and then we bump it up to 8 ML for the rest of the time.

From what I hear there is a 1 in 3 chance that Sophie will become extremely irritable. As my wonderful friend, Shandra, put it...the way Murphy's Law has been working with us lately, Sophie will be the 1. I am so thankful for honest friends. I am also thankful that she knows my daughter so well and loves her so much.

Sophie finally really woke up around 11 today where she wasn't so groggy and she actually interacted and smiled. That did our hearts good.

Dan and I are terrified. Shane wasn't here, luckily, and we are just trying to put on foot in front of the other because to be completely honest, we don't know our left from our right at this point. I don't know what is next, I don't know when heart surgery is and I don't know when and if I will ever sleep again.

I can't bring myself to pray right now because I am so pissed off at God that praying isn't something I can do right now. So, I am asking you to do it for me. All I can do is scream and cuss at Him. Luckily, for me, He understands and knows I will get over it...eventually. Right now, in this very moment, I don't want to get over it. My family has been through more in the past 3 years that most people ever have to experience. It isn't fair, I don't understand. I am tired of hearing that God sure knew what He was doing when He gave Sophie to us. She is just extra special, she just needs extra love. All I want to say is SHUT THE FUCK UP. YOU THINK THAT WE ARE JUST THAT SPECIAL TO GOD THAT WE GET TO HAVE BABIES DIE ON US AND THEN HAVE ONE THAT IS MENTALLY IMPAIRED. REALLY? Last time I checked, special was a good thing. Special was a reward. I feel like I am being punished. Nothing about this is good or ok. Sorry, I am just being completely honest right now.

Once I know more I will update you. At this point, I am just waiting. Waiting for the doctor to call, waiting for my daughter to not be so sleepy, and waiting for her to have another seizure.

The 1st of Many to Come

Yesterday, the doctors, Dan, and myself believe Sophie had her very 1st seizure. Usually we celebrate firsts, but not this one. We knew it was coming, but with everything we have read and heard from the doctor, we didn't anticipate it happening already.

I was helping set up for my sister's bridal shower. Around 11 am my grandmother and sister-in-law was playing with Sophie, fed her, and then Sophie was really fussy so I took her from my grandmother and all of a sudden Sophie went limp, he eyes rolled back in her head father than I have ever seen and he lips went blue. I had to "slap" her back to focus on me and I just felt in my heart that it was indeed a seizure. Sophie slept the rest of the day. She woke up for a couple of 30-45 minute installments where she was fed, but then she puked it up. Sorry, Faith!

I talked to my friend Kate, her daughter has a rare form of epilepsy, and she told me what I needed to do. I called Sophie's heart doctor and he told us that he believed it was a seizure and not cardiac related. He advised us to call her peds doctor. Dr. Adenuga was on call so I was able to speak with him. Dr. Nuga advised us that we needed to bring her in so she could be evaluated. I hesitated because I didn't want to do it, I didn't want to believe this was all happening.

Dan, Shane, Sophie and I sat down for dinner and Sophie had just woken up again. I gave her a bottle. After 1 ounce Sophie lips turned blue and she puked again. I left immediately and took her to Bixby. Once we arrived Sophie was rushed right in. There were 4 nurses and 1 doctor around Sophie all at the same time. I was impressed at how quickly they moved with her. Sophie was given an IV and she was such a trooper. The man who did it got it on the first try. That has never happened with Soph! She only fussed for a moment until I have her the rest of her bottle and she was happy. Dan got there and he was trying to comfort Sophie who was mostly mad at the fact that she couldn't put her arm behind her head with it being tapped to a board with her IV. He couldn't calm her down. I took her, we stood up and swayed back and forth. Puke....again. I was covered. Sophie slept after that.

U of M peds neurology was called and they are going to call me Monday to get Sophie is either Monday or Tuesday. I will be up there Monday so say some prayers that they can get her in that afternoon. Sophie is going to be so mad at me Monday because it is going to be a long day. Peds Neuro is going to have to clear Sophie for surgery on Thursday. Her surgery can't wait. Please believe with me that everything will stay according to plan.

Today Sophie is tired. This morning she was doing motor boats and babbling. She is now sleeping. I am going to go take her out of her car seat and cuddle with her the rest of the day. She sure knows how to keep me on my toes.

June 14th & Odds and Ends

I just received the call, the date is set! Sophie will be having surgery at St. Vincent's Mercy in Toledo, OH on June 14th at 8:00 am.

I spoke with Kimby, Dr. Butto's nurse yesterday and she told me that they were waiting to hear back from the anesthesiologist to see if he could be there.

How this is all happening simply amazes me, not sure if it is in a good way or not yet. Last Wednesday Dan was told we could wait until June 20th to go back and see Dr. Butto and schedule surgery then or we could call and do it sooner. When I spoke to Dr. Butto on Friday he said that he though it needed to be done sooner than later so we made the choice to do it sooner. Dr. Butto didn't have an opening until the end of July and he said she couldn't wait that long. Really? Then why did you tell us we could wait until June 20th when we saw him again?

Instead of waiting until July Dr. Butto made his adult patient take the July opening and Sophie is in the June 14th opening. The peds  anesthesiologist is out of town at that time so the adults anesthesiologist is going to be in there with Sophie. Pray for wisdom on his end to know the difference in how much a baby needs and an adult. I know it will all be ok, but extra prayers will never do harm.

In the meantime Sophie is laughing, giggling, rolling all over the living room, bearing weight on her legs, and loves to hang out in her crib. When Dan goes to get her after she wakes from her nap, she will yell at him and get mad because he took her out. She has quite the personality and isn't afraid  to "tell you" what she thinks about any given situation. She must get that from her daddy....hahahahahaaa, we all know better! With all of this chaos that we are surrounded by on any given day, one thing that has remained constant and unchanged is Sophie. Yes, Sophie. Even though the chaos is usually stirred up because of her health issues, one would never know. Sophie will brighten your day, make you smile from the inside and because of her, I am a better person, a better mom! Thank you Sophie for being such a bright light in my life.

Shane has passed the 5th grade, by the seat of his pants. This has been a rough year for him with school. It isn't that Shane isn't capable, because he is very bright, but Shane doesn't give two hoots about anything. He doesn't care that he gets a 0 when he doesn't turn in his finished assignments, or he doesn't care when he punches someone for telling him "At least I have a mom"! (We didn't punish him for that because truth be known, I would have punched the kid too)

 Shane has a lot on his plate and he is doing the best he can with the hand that has been dealt to him. He plays each card strategically and knows what he is doing. I can't fault him for that. Shane had a great team of teachers behind him this year and I can say that we as a family were blessed to have those women in his life as well as his principal and assistant principal. Shane finished with 4 A's and 3 C's! It could be worse, it has been worse! We  just want Shane to do his best and feel good about it. The feeling good about himself is what we are working on now. Thank you Shane for being so refreshing. You are full of life, personality, and kindness. You have a heart of gold. I am proud of the young man that you are trying to become. You are like a diamond in the rough, the best is yet to be seen!

No Date...Yet

I wanted to keep you all informed of what is happening with Little Miss. Sophie's doctor and I finally connected yesterday and he strongly believes the surgery needs to be done now, so we are taking is advice. He said that he is hopeful that the device will work but he can't make any promises.

The good news is that just last week, Dr. Butto did the same procedure on a baby smaller than Sophie and younger and it was successful. Praying the same happens with Sophie.

Dr. Butto's nurse will be calling me to schedule the surgery. As soon as I know the logistics I will let you all know.

Thank you for believing with me that our Jellybean, Little Miss, Sophers, Loomis (Sophie has many adoring names from her fan club), will be perfectly fine after the surgery and that it WILL be a success!

Love you guys!

The "Right" Decision

Dan took Sophie to her check up today and her cardiologist shared some great and not so great news with us. As you may recall, Sophie was born with PDA, Pulmonary Stenosis (both were fixed in August 2011), 2 VSDs, and ASD. Well, the 2 VSD murmurs are now 1 and the remaining 1 is smaller in size. The PDA closure device looks great and so does her Balloon for her valve.

The not so great news is that the ASD hole is 1 mm bigger than 2 months ago. Sophie only gained 1lb in 2 months and Dr. Butto strongly believes that if we wait to do surgery that the hole may continue to get bigger and then the only option he will have is open heart surgery, which we have been avoiding for 14 months! The office scheduled Dan and I to bring Little Miss back in on June 20th and we would schedule surgery at that point, or we call tomorrow to do it sooner.

Dan and I were just talking and we both feel like that if we wait until the 20th that we are that much closer to Sophie having to have open heart surgery. Just typing it out is terrifying. So, what do you do as a parent? Do you wait until the 20th of June in hopes your baby grows more so her body is big enough for the device to go through her arteries and have a successful surgery, or do you schedule it now knowing she isn't quite big enough and the device might work but cracking her chest open is still an option?

The decision we have made is that I will be placing a call to Sophie's cardiologist to schedule her 2nd heart surgery. What makes this even harder to digest is that Dan and I are missing Denton and Quinton. In 9 days in their 3rd birthday. Last year on their birthday I waited with Sophie in her hospital room for surgery the next day. This year, I am terrified we will be taking her in to surgery on that day. I feel like we can't win!

Scorn Not Her Simplicity

I saw this on Mowatwilson.org and I wanted to share. I didn't write this myself!

See the child
With the golden hair
Yet eyes that show the emptiness inside
Do we know
Can we understand just how she feels
Or have we really tried

See her now
As she stands alone
And watches children play a children's game
Simple child
She looks almost like the others
Yet they know she's not the same

Scorn not her simplicity
But rather try to love her all the more
Scorn not her simplicity
Oh no Oh no

See her stare
Not recognizing the kind face
That only yesterday she loved
The loving face
Of a mother who can't understand what she's been guilty of

How she cried tears of happiness
The day the doctor told her it's a girl
Now she cries tears of helplessness
And thinks of all the things she can't enjoy

Scorn not her simplicity
But rather try to love her all the more
Scorn not her simplicity
Oh no
Oh no

Only she knows how to face the future hopefully
Surrounded by despair
She won't ask for your pity or your sympathy
But surely you should care

Scorn not her simplicity
But rather try to love her all the more
Scorn not her simplicity
Oh no
Oh no
Oh no

Mowatwilson.org

I was put in contact with Dave Curry, he lives in Las Vegas and he and his wife have a son with MWS. They decided to develop mowatwilson.org to help others connect with one another. Because of this site, I was able to meet Sarah, a little girl that has MWS and live in Northville, MI. I can't explain to you what it was like.

I was asked to send Sophie's story in to them so it could be published. Well, I did it. Who knew I would be writing our story out...again, but this time for a different purpose.

Take a gander, it will help you learn more and become familiar with the faces of MWS.

http://www.mowatwilson.org/sophie's_page.htm

365 Days Later

What a year it has been! This year has been full of blessings and hardships. Dan and I were just talking the other night and I told him like I have told everyone, I feel like this has been the longest year of my life and in the next breath, I can't believe how quickly time has passed.

Looking back I am going to highlight some of the good and bad points of this past year:

Sophie's birth
Transported to Toledo Children's Hospital for 6 days
Meeting her Grammie for the first time
Coming Home
Sophie being diagnosed with Hirschsprung's Disease
Dr. Butto finding not 1 but 2 holes in Sophie's heart as well as Pulmonic Stenosis.
Endorectal pull-thru surgery when Sophie was just 2.5 month old. It was the day after the 2 year birthday day of her twin brother's. Talk about an uneasy feeling having her go into surgery!
Training Sophie's anus to work properly
4 day stay over the 4th of July at Toledo Children's Hospital because Sophie stopped eating and she was backed up with gas.
Sophie rolled over from belly to back for the first time
Doctor Appointments in Toledo every month
Happy Birthday to me!
Sophie staying overnight for the first time with Nana and Papa
Football Season for Shane
Heart Surgery at 4.5 months- the longest 6 hours of my life...literally
We got MARRIED
Sophie started being awake more and smiling
PT and OT once a week
Shane's 11th Birthday!!
MRI needed for her vision problems - U of M was unsuccessful to say the least
Physical Medicine doctor highly recommended the MRI
MRI rescheduled in Toledo
2 doctor's urged us to have genetic testing done on Sophie because of everything that she had going on. They believed it was related to some sort of syndrome.
Sophie visits U of M for genetic testing. Mowat-Wilson was what she was being tested for.
Thanksgiving...I wasn't feeling very thankful. My husband had to tell me to be thankful for the small things.
Christmas
New Year's
Sophie was diagnosed with Mowat-Wilson Syndrome on January 2, 2012 at 10:31 am.
At that point my world ended and it is starting to start up again!
Sophie getting stronger each day
Another heart surgery needed but they are waiting for her to reach 20lbs.
Sophie laughing and smiling, and giggling daily
Sophie rolled over for the first time from back to front at her heart doctor appointment the day before her 1st Birthday!!!
HAPPY 1st BIRTHDAY  SOPHIE!!!!!!!!!!!!!!!!!

Whew! That is one heck of a year. What I am learning through this journey is that I have to take things one day at a time or even one moment at a time when a day seems too long! We are so blessed beyond measure and I tell myself that daily. Don't get me wrong, all of this sucks but it is starting to get a little less sucky!

What Do You Say?

As many of my friends and family know, I will always find something to relate back to the lyrics of a song that I like or that I have heard along the way. I have also been known to, on occasion, ok...often break out in to random songs.  As you read this please keep in mind this course:

"What do you say in a moment like this

When you can't find the words ooh to tell it like it is?

Just close your eyes and let your heart lead the way

Oh, what do you say?

Sometimes you gotta listen to the silence

And give yourself time to think."

Shane, Sophie and I were on our way back from my soon to be Sister-In Laws bridal shower when Shane seemed to be more silent that he normally is. I asked what was on his mind, a question that I like to ask every now and then. He said nothing, of course, and I asked, Are you sure? Then it started. 

Here is how our conversation went:

Shane: "What kind of job do you think Sophie will have when she grows up?"

Me: Silence

Shane: Asked me again

Me: "Shane, I am not sure you fully understand what is going on with your sister. Sophie will never be able to work, sweetie. She isn't going to have the mental capabilities to do it and your dad and I will take care of her the rest of our lives."

The look on his face was heartbreaking!

Shane: "You mean she is always going to live with you?"

Me: "Yes, honey, she will never be able to take care of herself."

Shane was quiet for a few minutes and I was fighting back tears. Not only was I trying to process everything that Sophie is going through, but everything that my son has to go through as a result of his sister not being what society perceives as "normal." 

What seemed like forever was only a few minutes when Shane piped up again and this time, I wasn't ready for what he had to say.

Shane had a tone to his voice, he was angry, he was hurt and he was sad.

Shane: " I had dreams for my sister. I dreamed she would have a great job. Now that's not going to happen. I dreamed she would drive a nice car. That's not going to happen. I dreamed she would get married and have kids, that's not going to happen. I dreamed she would be able to talk to me, who knows if that will happen. I dreamed she would play with me, I hope that happens."

I was in tears. I couldn't speak. Sophie was in the back seat sleeping and Shane was sitting next to me crying as well. 

All I could tell Shane was that it sucks, it isn't fair, and we are going to do the best we can. I said, I know Sophie will play with you. Then, I reached over and held his hand. We didn't speak, we just cried and I just drove.

So, what do you say? 

All I know is that Sophie's condition just doesn't affect her, Dan and I. It affects every single member of our family. Shane is an amazing child who feels deeply, loves deeply, and honestly cares about people. He loves his sister so much that it hurts me to see his dreams for her crushed. 

So, in our journey together as a family, as friends, I ask that once in a while you don't just ask how Sophie is doing, but also remember Shane in your thoughts and prayers. He needs them.

3 Steps Forward...2 Steps Back

With the passing of my cousin's baby girl, Sophia Lynn, I am brought back to the reality that I too still feel the same pain that Michelle is going to be feeling, either now or later on down the road. Grief hits us like a ton of bricks and I honestly believe that it is even worse when it is someone young, someone who hasn't had a chance to start their lives.

Going through everything with Sophie also makes me grieve the loss of Denton and Quinton again. I knew I wasn't over it, as I will never be, but I had developed some good coping skills, I had worked through my grief, I was in a good place, and now I feel like that I am back at the beginning of my grief journey. Not at the beginning as I am in despair, crying everyday, but that I am constantly reminded that my two twin boys are not here and they never will be. That life is here today, gone tomorrow.

In the process of grieving Denton and Quinton all over again, I am also grieving the death of the dreams I had for Sophie. Everything that she would grow to be, keeping her secrets, hearing the words I love you or mommy. The things that before Sophie, I would have taken for granted.

As I am walking step by step through this journey I am reminded that I do have blessings to be thankful for. even though the darkness is so much darker that the sunshine at this point in my life, I do know that we are blessed beyond measure.

Some days it takes everything I have for my feet to hit the floor in the morning. Some days it is like nothing has ever happened in our lives. I am learning to take things moment by moment. I was at a funeral last year when the Pastor said take things a moment at a time because sometimes a day is just too long. That statement resonated with me and I am learning to take the good moments throughout the day along with the bad ones.

2%

If someone were to tell you that there were only 170 people in the WORLD that had a rare genetic condition, what do you think would be your chances of having it or having a child with it?  I can answer that for you...there is a 2% chance of your child having this condition.

As you can imagine Sophie has had many doctor appointments in Toledo as well as in Ann Arbor. I am very pleased with both places, with the exception of an isolated incident that took place at U of M. During these different visits I was approached two different times, by two different doctors asking if we have had genetic testing done on Sophie. Of course my response was no. Why would we do that. Dan and I were under idea that once we had the HD and heart issues taken care of, Sophie would get back on track and start meeting her developmental milestones. Boy were we wrong!

On November 23rd, 2011 I took Little Miss to see Dr. Hannibal at the U. Dr. Hannibal is a geneticist. Once we arrived he started asking questions, taking pictures, examining Sophie, and he kept saying, "if it is what I think it is..." I stopped him and asked "Can you please tell me what you think it is?" Dr. Hannibal stopped what he was doing, looked me straight in the eye and said he truly believed Sophie had Mowat-Wilson Syndrome. Mowat What? Exactly, those were my thoughts. With all of my research that I had done preparing for this appointment, this is one syndrome that I had never heard of. I kept my composure for a while. I didn't want to breakdown in front of him. I didn't want Dr. Hannibal to see how scared I was. So, I sucked it up. Literally, I sucked in air through my nose so I wouldn't cry. Then it happened. I opened my mouth to ask a question and my voice cracks. I automatically apologize as if I have done something wrong. Dr. Hannibal actually told me he was surprised that  had kept it together that long. I expressed to him that I have had 2.5 years of practice.

Dr. Hannibal sent Sophie and I back out in the waiting area so I could call the insurance company to confirm that the genetic tests, which totaled over $23,000, would be covered. Praise the good Lord they were. Sophie had her blood drawn on November 28th and it was sent to Chicago to separate the DNA. I was told it would take 4 - 6 weeks before we would hear anything.

During that 4 - 6 weeks I honestly believed my daughter did have MWS. There wasn't an ounce of faith left in me to believe anything different. I started the grieving process for my daughter. I became, and still am angry. I am angry that this was happening. The only thing I asked God for was a healthy baby and He decided I didn't get to have that. Everyday for 6 weeks I carried my phone with me everywhere. I even slept with it next to my bed as if they would call in the middle of the night. I am laughing at myself too!

On January 2, 2012 I was driving the company vehicle to Jackson to make some sales calls. It had been 6 weeks and 1 day. My phone rang at 10:34 and I saw the 743 #. I knew it was the U. I took a deep breath and answered. Dr. Hannibal asked me how I was, like he really needed to ask that question. I said fine. We all know what fine means. He said he received the results back and asked if I really wanted them over the phone. I said, absolutely. Dr. Hannibal said that Sophie didn't have a mutation of the ZEB2 gene but she had a deletion of that gene which confirmed his diagnosis of Mowat-Wilson Syndrome. At that moment my world stopped. It is one thing to believe it in your heart, but it is something completely different to have it confirmed. It all became even more real.

After I received the call I went and picked Sophie up from Auntie Amy Jo's house. Sophie was spending the say with her since her sitter's son was sick. Sophie and I went home and I had to break my husband's heart by telling him my fears were confirmed. Dan and I handle things in two completely different ways. Dan doesn't deal with it until he knows for certain. I handle them at the first sign there might be an issue. I would rather prepare for the worst. 

In one phone call our entire lives changed forever. I have had people tell me it is ok, that it doesn't change anything, we still love her. I have had people tell me that God is in control and He will take care of her, that Dan and I were chosen to be her parents because He knew we would love and take care of her. As great as all of that sounds, I am going to be completely raw here, it is a load of BS.

1st...nothing about this is OK. ABSOLUTELY nothing.

2nd...you can't honestly believe that nothing changes. EVERYTHING changed...EVERYTHING. 

3rd...Yes, God can heal her, but right now, in this moment, my faith is running slim to none. God didn't save my boys, why should I expect it would be any different with my daughter?

4th...I know you are trying to make us feel better, but nothing will.

At this point I am asking my family and friends to be patient with us. We are working through some pretty tough stuff right now in our lives and it is only going to get harder before we will see the light on the horizon. Our lives are forever changed.

I am grieving the loss of my daughter. Not in the physical, but in the emotional and mental sense. My daughter may never be able to tell me she loves me. I may never hear those words from her. I may never hear mom, or dad, or I'm in pain. I will be lucky to to hear those words. In the 5% lucky. I have deep, deep pain. Please, be patient.

I have copied and pasted a little bit on MWS. You can find more at mowatwilson.org

"Mowat-Wilson syndrome is a genetic condition that affects many parts of the body. Major signs of this disorder frequently include distinctive facial features, intellectual disability, delayed development, an intestinal disorder called Hirschsprung disease, and other birth defects. Mowat-Wilson syndrome is often associated with an unusually small head (microcephaly), structural brain abnormalities, and intellectual disability ranging from moderate to severe. Speech is absent or severely impaired, and affected people may learn to speak only a few words. Many people with this condition can understand others' speech, however, and some use sign language to communicate. If speech develops, it is delayed until mid-childhood or later. Children with Mowat-Wilson syndrome also have delayed development of motor skills such as sitting, standing, and walking."

She's Truly a Miracle

It was a dinner date that I was having with my high school bff and we were enjoying an adult beverage. I had one PERFECT margarita and I felt like I had been demolished by a Mac truck. Something inside of me sparked up and I wondered...could I really be pregnant? I had only been off of birth control for one month, the month of July. During the month of July I had a 3 week battle with poison ivy...and I lost. I was at the doctor three different times and I had taken a steroid shot and pills. He had asked me if there was any way I could be pregnant. My reply...um, no! Little did I know, we conceived Little Miss, Jellybean, Baby Girl Stegg, Loomis (all nicknames given to her before her arrival by family and friends) on or around July 22. I left the dinner date with Sammie Jo and went to CVS. I purchased a pack of three pregnancy tests. I went home, talked with Dan and took the test the next morning, August 7th, 2010. 

We all know how that test turned out! I had a great pregnancy, I flirted with having gestational diabetes but never went all the way! I was able to see Sophie several times through the ultrasounds. I even had my dad come to one with me. What a great memory we share together! Towards the end I had extra fluid and I was induced 1.5 weeks early. In reality, it isn't early at all! 

I was in labor, from start to finish, for 10 hours with only 21 minutes of pushing. Sophie Marie Stegg was born at 6:21 PM on March 31st, 2010. The first thing I asked if she was really a girl. One could say I was a little skeptical!

I tried breastfeeding Sophie and she wouldn't eat. The nurses all said that was normal. They took her to the nursery so I could sleep that night and the next morning my favorite nurse, Nurse Linda, came in and told me Sophie's sugar dropped a little so they had to give her some formula from a medicine dropper. The pediatrician on call stopped in and noticed that Sophie had a heart murmur. He said that it is something pretty common and not to be alarmed. So, I wasn't. Nurse Linda came in and took Sophie again to check her blood sugar and while they had  her she wanted to do an Xray because her belly was a little big. Sophie had not yet passed her first BM either.

I remember it like it was yesterday. I was sitting on the couch that converted in to a bed just starting to use the breast pump. Nurse Linda walked in and said that she had bad news. She said that everything was going to get scary at first but then it would be ok, that Sophie would be ok. Linda proceed to tell me that Sophie had an intestinal blockage and that Toledo Children's Hospital was already on their way. Sophie wasn't even 24 hours old and she was looking at her first surgery.  

I called Dan, he was picking Shane up from school, and told him that Sophie was being transferred and was going to need surgery. Dan and Shane came  up to the hospital right away and we were able to have some time with her before she left. Sophie was whisked away. Dan and I were able to find a sitter for Shane and our dogs and we were off to Toledo. Thank God for Amy Jo! She arrived at the hospital before we did and she had all of the information we needed in order to go directly to Sophie. Sophie was in the NICU and already had her IV and machines hooked up to her before we arrived in the room. 

Toledo Children's Hospital was able to slow things down for us so that we could comprehend what was happening. The surgical staff wasn't convinced that Sophie had a blockage but they knew something was wrong. Sophie was given a barium enema and from what I hear, she took the biggest...dare I say poop, that the nurse had ever seen come of our someone so small. Sophie started pooping on her own after that so we thought we were on the mend.

After 6 days and many tests later, we were allowed to take Sophie home to wait for the results of the rectal biopsy. When we were home Sophie was still going on her own but it was a struggle for her. The results came in and Sophie was diagnosed with Hirschsprung's Disease. HD is when the ganglionic cells don't grow all the way down your colon and your colon can't retract to push the stool out. The only fix for this was surgery. Since Sophie was going on her own we decided to wait and give her time to grow. As the days went on, Sophie started having more and more trouble going poop. She would scream just to pass the stool. When Sophie was only 6 weeks old we scheduled her surgery for June 10th, 2011.

June 9th I took Sophie to the hospital to check her in and to start the process of cleaning her out for surgery. It was awful. Instead of remembering Denton and Quinton on their birthday I was holding Sophie preparing myself to lose another child. June 10th came and Sophie surgery lasted just under 3 hours. Sophie came through the surgery well but Sophie started to go into congestive heart failure. Congestive Heart Failure is completely different in babies than adults. Babies don't die, they just have their lungs start to fill up with fluid and needs medication. Sophie was started on Lasix as well as Sprionolactone. High doses to boot! 

Sophie struggled for a while after the surgery and without going in to detail there were a lot of things we had to do daily with Sophie in order to have her fully recover from the surgery. It was awful and we felt like we were abusing our child.

Sophie was finally doing well with her HD issues (besides a week stay in the hospital around the 4th of July for being backed  up with gas) but her heart needed attention.

Sophie was also born with several heart defects. Sophie has PDA, ASD, Pulmonary Stenosis and 2 heart murmurs. On August 11th, 2011 Sophie underwent a valvuoplasty and PDA closure. It was supposed to take 4 hours. At the 4 hour mark the head assistant came out and told us the hole was too big and Dr. Butto didn't think he could do the procedure and that we were looking at Open Heart Surgery. At that moment I can't even begin to explain to you what I felt at that moment. Less than 10 minutes later she came back out and told us that Dr. Butto found a way to do the procedure. We were able to see Sophie 2 hours later. That was the longest 6 hours of my life. By the grace of God Dr. Butto was able to do this surgery. Prayers were being heard and answered.

So, Sophie had two surgeries before she was even 6 months old. I wish with all of my heart I could tell you that it ended there. But I can't! The truth of the matter is that Sophie has way more going on with her than any of us could ever begin to fathom. This post is extremely long so I will break for now. I don't want your eyes to start going crossed!