Leaps and Bounds

I hope everyone is enjoying fall! I am excited that the weather is starting to feel more like fall now :) Things have settled into a nice routine now that school has started. Rodi misses the kids while they are at school but we are keeping her very busy!

Rodi goes to play with her cousins two mornings a week so that she is getting to socialize with kids her age while her siblings are at school all day. She also started speech therapy in September and LOVES it! On speech day she asks me constantly if it is time to go. She says "Mom, lets go learn some words!" She is making great progress. We are also doing some homeschooling with her. She is learning a lot faster than I had anticipated. We started at the very basics, colors, shapes, animals and animal sounds, sorting things by color, cutting and tracing. She LOVES it. She begs to do school all day long :) Soon we will move onto letters and numbers I think!

Since she seems to be catching on very quickly and is so eager to learn, I contacted Rainbow preschool and they are going to be doing an assessment for special placement for her. The assessment will also help us know what to focus on with her homeschooling as well. Hopefully though she will start attending preschool around Thanksgiving time.

She will be having another surgery hopefully soon, nothing serious this time! She came home from Haiti with serious dental issues. In order to get them all fixed they are going to have to put her to sleep. This will be done down at Childrens Hospital in Minneapolis due to her heart condition. In fact, the only thing we are waiting for is for her cardiologist to agree that she can have this surgery so soon after open heart surgery.

She has made two more HUGE strides over the last month. First she is FINALLY potty trained! My other three kids were so easy, they were all potty trained with little effort on or before their second birthday. But Rodi was a different story. She was a little (or a lot) more stubborn, but one day it just clicked and that was it. Being potty trained has completely wiped out the problem of constipation she always had so that is great! Secondly, she is sleeping through the night :) This is the biggest victory of all if you ask me! Sleeping is something that we struggled with since the time she came home and it was aweful! I had to lie down with her so that she would go to sleep. The problem with that is that everytime she woke up in the middle of the night she would cry and need for me to come back in and lie down with her again. I was up 3 sometimes 4 times a night with her for almost a year. I had read so many books about sleep and tried everything I could think of. I really did not want to make her cry her self to sleep after all the trauma she has experienced in her life. But once I was out of other ideas crying it out was all that was left. It was hard for her for the first couple of nights but quickly she started falling asleep very shortly after I left the room and now she is sleeping all night. If she wakes up before the rest of us she will take her favorite books (SHE LOVES BOOKS!) to the bathroom and just look at the pictures until we get up :) It feels so nice to be getting a good nights sleep again!

A quick update about Michelle since a lot of you are fellow MAGIC moms, she will recieve her first shipment of growth hormone since March tomorrow!!! We are so excited. We have had a really rough road with her lately. Her blood sugars have been very out of control. Two weekends ago we were out and she could barely walk into the restaurant. She was shaking so badly by the time the food got to her that she was trying to hold her legs still with her hands but her arms were shaking so bad that she could barely use them. I had to cut up her food for her and help her eat it until she was better. That is by far the worst I have ever seen, and also the most scared I have ever been about her blood sugar! I was never in the room for her seizures so it was scary for me. We are now with a new endocrinologist. She now has a clinical diagnosis of Russell Silver Syndrome. This does not really change anything that we are doing with her. She has to continue to be on the Increlex, which we will now be able to get back to a theraputic dose once we restart the growth hormone. The new doctor told her that the best that we can hope for in regards to final adult height is 4'11". And this will only be possible if we are able to keep her on growth hormone and Increlex at a theraputic dose from now until she is done growing. With our insurance issues this makes it tough. So she was a little sad. We had a talk about how God has a plan for her life and has big things for her to do and if he needs her to be 4'11" to do them then that is ok! We got her to laugh but she still has her mind set that she is going to prove the doctor wrong HAHA! If anyone can do it, she can!

Have a wonderful day!

The Crooked Path

I was reading the book Calm My Anxious Heart by Linda Dillow the other day and this concept really stood out to me. It read, "I personally prefer the "straight" times! I like to be able to see how everything is fitting together. The crooked times are difficult, not just because they're crooked but because we can't see how God is working. But those are the times that require faith. Remember God is fitting things together even when we can't see. It just doesn't feel as good or as safe." She goes on to quote another author, "There is the crooked that God causes and the crooked that we create for ourselves and God allows. We make mistakes, blunders, messes. We create disorder, chaos, sadness and suffering by breaking God's instructions concerning how life is to be lived. Yet He who is in control over all things says, concerning the seemingly crooked that He has made or the crooked that we have caused "All things work together for the good, to them who are called according to His purpose."

Most of you know about the crooked path to which I am referring. I have guesses on whether this crooked path was God's doing or our own. I spent so many nights lying awake questioning that. But at the end of the day, I guess it really did not matter.

I have not updated this blog for a very long time. At first it was because I literally could not type the words. Later, it was because I was trying to be respectful. In the last post, the plan was for Rose Nacheca to go start a life with another wonderful, loving family. This was so incredibly difficult for my family and I. We were trying to follow what we thought was God's plan. We were so tired and drained and unsure of everything, not a good time to make big life decisions in case you are wondering!

As the time neared to have to say goodbye to her, all of these memories flooded our hearts and minds. Dan met this young lady when she was two years old and barely weighed 12 pounds. The night he got home from Haiti she was all he could talk about. Once I saw her picture I understood why. She really did truly look like Michelle and at once I was completely convinced that helping her was to be the main focus of our energy. And it was! We worked for months to get her here. When the earthquake struck Haiti, the urgency really mounted. Getting her out of Haiti was a challenge but not as big as the one that awaited her here in the US. She has gone through so many medical procedures and testing since she has been here, not to mention the two heart surgeries. Once you have fought so hard for such a helpless little person is it ever really possible to stop? We thought that we could, but it turned out that we could not. We had watched this little girl go from someone who spoke barely any words to anyone, who could not walk (she took some of her first steps to us while we were visiting her in Haiti over Easter 2010), who was failing to thrive to a little girl who speaks fluent English, not only does she walk but she runs jumps and dances, and she is now thriving.

While the decision to adopt her is very right for our family, we hurt some very wonderful people in the process. For that I could not possibly feel worse. So there are parts of this crooked path that we have to take responsibility for which is never pleasant.

Rose Nacheca is doing great! She has completely healed from her open heart surgery. Her scar itches her pretty intensely sometimes but otherwise she is completely unbothered by it. She has her first well child check up on August 2nd. We were so busy taking care of the big things for the last year and now it time to take care of the little things. I am going to ask for a referral for speech and OT therapy. Now that she has her hearing aids, she should be able to start speech therapy. Her sleeping issues are finally working themselves out. I talked to a very wonderful Neurodevelopmental Disorders Specialist at The MAGIC Foundation convention and she gave me some good ideas for sleep and so far they are working really well (thanks Nicole if you are reading this!!!). The other two things we need to make a priority now are getting her eyes checked (most kids with Noonans need glasses) and taking her to a pediatric dentist and getting the work done on her teeth. Her condition, Noonans Syndrome, has left her with poor enamel and she came to the US with some deep cavities. I think getting those fixed may help with some of her ongoing food issues.

I hope everyone is having a wonderful summer!

Jamie

Meet the Martinsons

Before I update on Rose's progress since her surgery I would like to introduce you to The Martinson's. The Martinson's will be sweet Rose Nacheca's "forever family". Brett and Vanessa Martinson and their 4 children Hannah age 10, Mackenzie age 6, Jackson age 5 and Carter age 4 are very excited to welcome Rose into their family. Dan and I have known the Martinsons for over a decade and think they are a wonderful family for Rose.

Some of you may be confused. There was always some uncertainty as to Rose Nacheca's permanent place in our lives. When we brought Rose here from Haiti our hearts were strongly convicted that we were to help this little girl get better. She was sick and we could help her. We heard God's call to action and we answered. It was such a blessing to welcome Rose into our home and watch her become such a sweet active little person. While we were always open to the possibility of making her a permanent part of our family, we really did not feel like that was God's plan for our life or hers.

The Martinson's heard God's call for that permanent action and they answered. While our hearts are sad and we will miss her terribly, she will have a wonderful home with loving parents and siblings. Even better than that she will only be about 15 miles away from us. She will still go to the same church and we are friends with the Martinsons so we will be able to keep loving her :) God could not have blessed us more in this situation!

I ask you to join me in prayer during this time for the Martinson's and our family to start to transition our families. Pray for the adoption paperwork to go very quickly and the USCIS to work with us to keep her in the United States during this whole process. They are moving at lightning speed getting all the paperwork going. God seems to be working out the little details. They will be doing some fundraising in the very near future to so if any one feels called to give please contact me and let me know.

As for Rose's progress it has been a little rough. About 11 days after her surgery she developed a high fever. This fever ended up lasting for 17 days!!!! We heard everything from she has pnuemonia, post pericardiotomy Syndrome, a blood clot in her jugular, staph infection in her sternum, infection in a heart valve, and the list goes on and on. They really had no idea what was going on with her. They were going to put her back in the hospital last monday if her fever was not gone. Luckily her fever started to go down over the weekend and she woke up on Monday fever free!!!!! I think the most likely cause was the post pericardiotomy syndrome after all. That usually last 14-21 days and is an inflammatory condition that can develop after open heart surgery. For those 17 days she did not eat at all and drank only what we forced on her so she lost a pound or so. She is back to eating and drinking normally now so hopefully she will regain what she lost and much more very quickly.

We go in to see the geneticist tomorrow. They will go into more details about the Noonan's syndrome. What we can expect for her future and things we can do to help her now that we know what is wrong. Vanessa Martinson will be coming along to start meeting her doctors and getting familiar with her medical issues. This is another great benefit of having her close by, she will be able to stay with the team of doctors who have helped her since she has gotten here.

Well I am tired, it has been a long fun weekend. Thanks for your continued prayers and support, and thank you for welcoming the Martinson's into our family :)

2 weeks Post op

Tonight I am laying next to Rose Nacheca as she falls asleep in her bed. Two weeks ago though I stood beside her bed as she had IV's, tubes, and machines attached to her. She was on a ventilator and heavily sedated. WOW what a difference 14 days can make :)

She improves every single day! Her medications were cut in half last Thursday so she only has to take medications a couple of times a day and no more waking up in the middle of the night for medication. Mom and Dad sure like this HAHA! Her pain is much much better now. She still is very uncomfortable in the morning until she has had some Motrin. Laying her down for a diaper change makes her wince. Getting in and out of her carseat are not her favorite things either. But as you can see in the picture on the left (which was taken today) she is back to her happy smiling self once again :)

Another peice of exciting news is that the geneticist called this afternoon to let us know that she did test positive for Noonan's Syndrome. She has a gene mutation of her PTPN11 gene. Now for those of you who know me well you know that every spare second I have had this evening (with 4 kids and a husband who is out of town there has not been many) I have been researching this mutation. Over all I am very comfortable with what I have read and the little I got from the doctor this afternoon on the phone. The biggest issue for Noonan's kids is congenital heart disease. This has now been corrected in Rose Nacheca so that is good. EVERY single thing that we have found to be wrong with her can be caused by Noonan's! Her heart defect, her short stature, hearing loss, all of it is a symptom of Noonan's. Now I know I sound way too excited upon discovering that she has a chronic medical condition but let me tell you why this seems like such a relief. Before we were feeling so overwhelmed because every time we went looking for something that could be wrong, most of the time we found something wrong. As the list of things started piling up it got to be very overwhelming and stressful thinking about what else we were going to find, what was the future going to look like for her. But now we have 1 diagnosis. Something we can look at and know what we can expect for her future. There can always be surprises along the way but from what I have been reading the most critical thing she will have to deal with was fixed two weeks ago today! Most Noonan's children have normal intelligence and live normal lives. Spending even a small amount of time with her you can know that she is a very smart little lady. She goes back to see the geneticist on Monday April 18th. At this time we will go over in more detail what to expect and she will answer any questions that we have.

We have come so far in 14 days!!! I am so thankful for everyone who has been praying for her. She is doing fantastic. Her skin tone has a nice pink glow to it. Her palms of her hands are pink :)

Good night!

We are home!!!!

We got to come home tonight. It was very disappointing not being able to update this while we were in the hospital. To go from open heart surgery to running, yes running, the halls in 4 days is absolutely amazing!!!

Those first two days were very challenging. Not just because of Rose Nacheca but because me being the emotional sponge that I am it was very difficult watching all the activity in the the Cardiac ICU. Both Tuesday and Wednesday nights we were directly across the hall from little infants who had also just had open heart surgery and had major crisises. All the doctors would rush in and send the parents out in the hall. Being that the wall is glass, it was like watching all the drama unfold on a TV screen. I would cuddle Rose Nacheca and just cry right along with the parents in the hall. Luckily they were able to get the situation under control and all the babies were ok. But what a scary thing for a parent to have to go through. I said many prayers for many people who I had never met before those two nights.

Once Rose Nacheca's chest tubes were out she really did perk right up. She was able to take wagon rides and explore the CVCC (CardioVascular Care Center). She quickly discovered they had toys, books and all kinds of things she wanted to play with. I used this to my advantage to bribe her to start eating LOL! Once she discovered those toys there was no stopping her. She still took lots of naps of course but she made friends with all the nurses who were lining the halls as she zoomed past them on all the riding toys they had there!

I am still in awe when the realization sets in that her heart is fixed. I see many signs of this already. Her nose and cheeks have a pink glow to them. The palms of her hands that used to be a very light brown color are now very very pink!!!!! It is a beautiful sight! It will be exciting to see if she starts to gain weight faster now. They believe that she will. I am very excited about this opportunity she has been given and also very glad that this week is over!

I had said before that I was having a hard time getting the strength to go through this but God really does give you what you need when you need it. As if the surgery was not enough excitement Dan had to speak at a funeral yesterday and Alex got an absessed tooth which had to be pulled out on Thursday. Due to severe swelling he had to go back to the oral surgeon today. Thank goodness for grandparents in times like this! It was heart breaking to not be able to hold his hand during this whole thing, I think I cried more about it than my brave little boy HAHA!! It feels very good to be home so that I can tuck all 4 kids into their own beds again :)

Thanks for all the prayers, I will continue to keep you updated on her progress. We have to go back for one more x-ray in the morning and then her post op appointment next Thursday. Have a wonderful weekend! Maybe when you tuck your kids in bed put your head on their chests and listen to the sweet sound of their hearts beating and let it fill you with warmth. I will never forget those families at the CVCC whose parents know all too well how lucky we are to be able to do this!

Post Op Day 1

Rose Nacheca did very well during her surgery. Once they got into her heart they found that she had more than one hole. We had been so disappointed when the catheter surgery on Valentine's day failed. Open heart surgery was something we desparately wanted to spare her. This news was a HUGE reminder of how God's plans are always perfect! If that surgery had been successful, if the patch had held, she would still have had a hole in her heart. Now she is lying in the bed next to me with a heart that is beating perfectly. This is such exciting news.

I sit here watching her, so very thankful for the opportunity that this special little girl has been given. This procedure would never have been possible in Haiti. Every doctor who ever listened to her heart got the same impression. You could see their face change as soon s they started listening to her heart. The words harsh, significant and extreme were all used to describe the sounds of the murmurs in her chest. Now it sounds perfect. Praise God!

Children's Hospital is amazing. The doctors and nurses are so wonderful and responsive. We got to stay at the Ronald McDonald house (which is one floor down from the heart unit) last night, so we were able to get a few good hours of sleep. They provided dinners for the families of children in the Intensive Care unit, free of charge every evening (and they are actually really good). I was even able to go down there and work out for 20 minutes on the exercise equipment they have for families.

They have kept Rose pretty sedated the whole day. There have been minor setbacks, like the chest tubes not coming out today, but over all she is doing great. Until the chest tubes are out we cannot hold her. The rare times she does wake up she is very unhappy. Not being able to comfort her is horrible. I crawled into bed with her so that she knew I was close. I held her hand and sang to her and she finally fell back asleep this evening.

Tomorrow once many of the tubes she has are gone, she will be more comfortable and be able to move around better. We can hold her and she will be able to start eating. So this will help her feel better faster.

Thanks for your continued prayers. The doctors say she is doing great. I wish she could talk to us. Goodnight!

Tomorrow is the big day.

Well Rose Nacheca is sleeping peacefully in her bed, completely unaware of what is going to happen tomorrow. Dan was watching her play tonight and said he almost feels a little guilty watching her be so full of energy and happy tonight and tomorrow she will undergo this huge surgery. I know that she is not old enough to understand, we have told her many times that they are going to fix her heart. At 3 years old though the reality just does not sink in.

Our pre op on Friday went very well. We got to tour the pediatric cardiac intensive care unit where she will spend the next 5 to 6 days. I will admit it frightened me quite a bit. I was really hoping that the other surgery would have worked so she could have been spared this pain. In my mind I understand that without this surgery her future would be very uncertain and her heart would not keep up with her growing body. The reality of the fix though feels very scary at this moment. Children's Hospital is a wonderful place and she has fantastic doctors who do this everyday but it just feels very different because we know and love this little patient so much!

Your prayers and support means so much to us. We know that Rose Nacheca is in God's hands, he will watch over her before, during and after the surgery. He will be sitting with us as we are waiting to be able to be with her again. I will be updating Facebook tomorrow whenever we hear anything and will try to update the blog often while she is in there.

Update on Heart Surgery

First, I would like to thank everyone who was praying for Rose Nacheca! All of your support is greatly appreciated.

Rose Nacheca is home. She did just perfect today. The perfect little patient. Unfortunately, the surgery was not a success. To say that this was a disappointment is a HUGE understatement. I think my heart broke a little bit when the doctor said he was unable to fix hers. Okay, it broke a lot! They were able to get the patch in place and it stayed in place just like it was supposed to. Unfortunately the hole was rather large for her little heart. The patch was pressing on her artery and they had to remove it.

One funny thing that happened this morning is when they gave her the medication that was supposed to relax her and it made her really cranky. Everyone who walked into the room she would look at and tell them to get out and shut the door. If they would not leave she would say to me "Mom tell them to go away and shut my door!" It was very funny.

This was not really the Valentines day we had in mind. We were hoping to be celebrating a successful surgery and a newly improved heart inside of our special little Valentine. But instead we get to spend the evening at home with the other three kids eating the Valentines cake they decorated with grandma this afternoon. That is equally sweet.

Monday March 14th Rose Nacheca will go in for open heart surgery to complete what they tried to accomplish today. This will be a more difficult procedure and 5 days in the hospital, 3 in the ICU. Your continued prayers would be appreciated.

We love you! Happy Valentines Day!

Heart Surgery

WOW, it has been a really long time since I have updated this. Life has been busy the last couple of months. Rose Nacheca continues to thrive here in Minnesota :) Her English is understandable to most everyone who talks to her now! She has grown 2.3 inches since she arrived here and gained 6 pounds! Aside from the frequent colds and ear infections she has been pretty healthy. She managed to escape the stomach flu in early December which was good since she really cannot afford to lose any weight!!

We met with the cardiologist for a repeat echo to check the hole in her heart. At the last appointment in August they told us the hole was 8 mm. They said that if we got her closer to 25 pounds they could easily fix the hole in the cath lab as a same day surgery with a patch. At the appointment today she weighed 23.4 pounds which is closer to 25 pounds but the hole in her heart had grown to between 11 and 12 mm. The weight gain and growth is good news, the growth of the hole is not. The cath lab surgery is ideal for holes of 11mm or less. So we are borderline for the cath lab being a possibility. The doctor said that there is a 50/50 chance they will be able to fix it in the cath lab versus open heart surgery. The benefit of the cath lab is that it is a same day surgery and way less invasive and minimul recovery time. Open heart surgery would be a major surgery requiring 5 days in the hospital (two of those days being in the ICU). There would be a big incision and scar on her chest but it would definitely fix the problem.

After discussing the options we have decided to go ahead and schedule the cath lab surgery for sometime next week and we will at the same time schedule the open heart surgery for 3 weeks from now. If the cath lab surgery is successful we will cancel the open heart surgery. If it is unsuccessful we will go ahead with the open heart as scheduled.

This is where your prayer comes in. Please pray that they would be able to fix her heart during the cath lab procedure! Open heart surgery is way more complicated, painful, a much longer hospital stay and a lot more expensive.

This little lady has beaten way worse odds than 50/50!!!! Please pray with us that this would be successful and would fix her little heart :)

We will also be going to a geneticists to see if they can determine which syndrome that she has so we can get a better idea of what her future may hold. The possibility of Noonan's syndrome was mentioned by the cardiologist today. I have a friend who has a child with this syndrome and she is doing great.

Thanks for the prayers!!!