The reach of a single Rose :)

God is always working!!!

It has been over a year since I have updated this blog.  I guess that is good, it meant that things were going good.  Rose is doing great!  She is enjoying preschool again this year.  She goes Monday, Wednesday and Friday mornings.  She only has to go see her cardiologist and geneticists every couple of years YAY~ AND most importantly, as of May 16, 2012 she is officially Rose Nacheca Sorensen!

Michelle is doing AWESOME!  She is growing so well right now.  Reading my last post I had said that her doctor thought the best that we could hope for would 4'11".  She was not happy with this at all.  We have been on Growth Hormone again for over a year and she is already at 4'8"!!!!  So she will indeed prove her doctor wrong if she keeps growing at this pace :)

What really motivated me to get on and post again was a conversation I had a few weeks ago.  When Rose was in Children's Hospital having her open heart surgery we met a man named Jim (I do not remember his last name).  Jim was Rose's anesthesiologist.  He came to talk to us about Rose.  He and his wife were in the process of trying to adopt from Ethiopia.  They had just recently recieved some bad news about how long that might take, if it would ever work at all.  At this time we were still unsure of where God had intended Rose to be long term.  He took an interest in Rose.  He came to check on her while she was in the hospital.  In the end, his family really felt that Rose was already home where she was supposed to be.  Turns out they were right :)  This was in March of 2011.

On December 19, 2012 Katie and I were driving to Children's hospital where Katie was going to be having surgery to remove her gallbladder.  I found myself wondering if maybe Jim would also be her anesthesiologist.  He wasn't.  When I was walking down the hall though I made eye contact with someone I recognized but it did not click with me right away that it was Jim.  When I came back down the hall I approached this man in scrubs and reluctantly asked if his name was Jim.  He showed me his idenity badge and said that he was indeed Jim.  I told him my name and who I was.  He remembered Rose right away and asked how she was doing and if she was there with me (she wasn't).  While we were talking he told me that they followed her blog (this blog) and were so very happy when they read that we were going to be adopting Rose after all.  Then he said he wanted to share something with me, he said that in a way Rose really changed their family. 

Jim reminded me of his families desire to adopt.  He said until they met Rose they had only considered adopting healthy children.  Then he took his phone out of his pocket so that I could see his new daughter (I desperately wish I could remember her name!)  Turns out that after meeting Rose they ended up adopting a special needs child :)  She is also hearing impaired like Rose and wears hearing aids like Rose.  She had a cleft palate/lip and has had several surgeries right there at Children's Hospital.  Jim said that she reminds him of Rose.

I was so overwhelmed with emotions at that moment.  Rose has definitely blessed our life but the thought that another little girl like her who also needs a little extra help with life got a loving family also just brought tears to my eyes.  It really touched my heart.  It was very cool to hear how God is always working.  I gave Jim a hug and said a silent prayer thanking God for letting our paths cross that day.  When Rose was in the hospital Jim had made her a bicycle which has been on our fireplace ever since.  Now every time I look at it I smile and think to myself how good God is and thank him for families like Jim's who love the special needs kids of this world.

Rose will be going to see Michelle's endocrinologist to see about a growth hormone stimulation test sometime in the near future.  The thought of having two children on daily injections is slightly overwhelming to me but we will just do what we have to do.

Happy New Year from our family to yours!

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!!!

Hello everyone. We are all anxiously awaiting snow here!!!! Dan is so excited to see Rose Nacheca's reaction to her first snow :)

Things are still going wonderfully with her. She loves music!!! She asks to listen to her favorite songs over and over again.

We had an appointment at the endocrinologist for both Rose Nacheca and Michelle last week. Oddly they had both grown almost exactly the same amount 3/8 of an inch in 3 months and both gained 2.5 pounds. Neither of the girls had grown what a child their age should have grown but we will take whatever we can get out of them LOL!

Rose Nacheca also went to the audiologist this week. One of the complications that can develop from this infection she acquired in utero is hearing loss. She does indeed have hearing loss. She has moderate hearing loss in her left ear. And minimal hearing loss in the right. She needs to go in and have a procedure where they sedate her and hook electrodes up to her head. They will put sound in her ears and then see how her brain reacts to the noises. This will tell them what kind of hearing aids she needs. This process can take a little time so we are hoping that we can get it done before her visa is set to expire. Although getting her visa extended should not be that big of a deal should it come to that.

Otherwise things are going great! She is tolerating her tuberculosis medication very well. It tends to upset her stomach so we are experimenting with the best time of day to give it to her. The morning between breakfast and lunch tend to work best. If she takes it at bedtime she does not sleep well at all :(

She is so sweet and affectionate. She learned how to say I love you so whenever anyone leaves or comes home she is waiting with a hug and tells them that she loves them. We all love her too!!!!!

Thanks for the continued prayers!

Rose Nacheca did very well for her MRI and cat scan on Friday :) The MRI was to check her pituitary gland. That turned out completely normal.

The cat scan was to look for active Tuberculosis. Her skin test came back positive for exposure to Tuberculosis. This freaked me out at first but we went right to the infectious disease doctor who assured us that the chest x-ray she had the first week she was in the United States was clean so his feelings were that she was not contagious or sick. He did follow up blood work which was also good. The CT scan was just precautionary because the standard treatment for inactive tuberculosis is a course of 9 months antibiotics. If there had been active infection and we treated with only one antibiotic that could cause resistant bacteria. But the scan turned out completely normal confirming what the doctor already thought. She is healthy and cannot make anyone sick! She will most likely start her 9 months of medication this week.

It seems like the more times we go looking the more things we find. She is iron deficient (not a surprise since there is very little meat that she will eat!) so she is now taking a supplement for that too. The next time she goes back to the doctor is on October 22nd when she sees the endocrinologist again. I am excited to see if she has grown at all. It will have been 3 months between visits so there should be growth!

I have not updated on Michelle lately. She is doing well. She has back on her Increlex, almost her full dose. We have to increase it very slowly to make sure her blood sugar can adjust. She is still having some issues with hypoglycemia but they are much less frequent than before we added the growth hormone. Her school decided to write a 504 plan for her so that every teacher she works with is completely informed and educated on her condition and hypoglycemia issues. This year she has only had to go to the nurse like 3 times with low blood sugar so we are happy with that!

Hope everyone is enjoying fall! We are experiencing quite a heat wave here the last couple of days. Friday it was 87!!! Lots of going to the park and hanging outside for us this weekend:)

Good news!

Rose Nacheca had her appointment with the Infectious Disease doctor today. I have been dreading this appointment for the last 10 days since we heard her test results. I had feared the worst and it turned out I worried for nothing.

Rose Nacheca has indeed had CMV at some point. This doctor though seems to have serious doubts that it was during the first trimester of her mothers pregnancy with her. She does have some characteristics of congenital CMV but she is NOT severely affected. Things could have been so much worse. At this point the biggest concern is her hearing. They set us up with an appointment with an audiologist in November to see how well she hears. They ordered some other blood tests to check how some organs are functioning but overall he is VERY happy with how she looks :) He really thinks she will do just fine!!!!

So I guess we go back to the endocrinologist to pursue the low IGF-1 and IGFBP-3 levels. The next step for her is a MRI. Not too sure when that will happen yet. Hopefully soon!

Thanks for the prayers!!! She has been sick since Friday. She has had a cold, fever and stuffy runny nose, and now she has an ear infection again. So hopefully with the new antibiotic she will start feeling better (and sleeping better LOL) really soon!!!

It has been a long time since I have updated this. We have been very busy with the kids going back to school.

We have some more news on what is going on with Rose Nacheca. Our endocrinologist went out of the country the week after Rose Nacheca's initial appointment. All the results from her blood tests were unavailable until he returned a week and a half ago. He called last Thursday to let me know we had some answers.

There are certain infections or viruses that can cause serious birth defects when a mother gets them during the first trimester of pregnancy (like measles). Rose Nacheca's mother had one of these infections during her first trimester of pregnancy which is what is causing her failure to thrive. She tested positive for the antibodies which means she is now immune. However her small head, severe growth retardation and heart defect all orginated from this infection mom had. She goes to a specialist on the 27th to see what other organs might be impacted as well. One of the complications that frequently happen with this is hearing and vision loss. It is a degenerative thing so this could happen at any time in her future. This news made me very sad. She is thriving so well, learning to talk and speak English so well. To know that there is a chance (we don't know yet how likely) that she will lose her hearing was very devastating!

She is also deficient in the same hormones that Michelle is deficient in. There could be a couple of different causes of this but they all originate from the birth defects she was born with. These hormones are primarily produced in the liver and the liver can be affected by her condition so this could be causing her liver to not be functioning properly. She has had liver panels done and they were normal so that is a good sign. The other possibility is that her microcephaly (small head) is affecting her pituitary gland and causing her to be growth hormone deficient which would also make her IGF-1 levels be low. More tests have to be done at the endocrinologist to determine for sure what the source of her low IGF-1 and IGFBP-3 levels are.

So we were very surprised by this news. She is such a happy little girl. She can speak full sentences and understand almost everything that you say to her! She says please when she wants something and thank you when you give it to her. She keeps up very well with the older kids in the house. We read lots of stories and she would color for hours at a time. I will be honest when I say I was a little angry inside at her diagnosis. An infection that would be so inconsequential at any other time except the first trimester of pregnancy has left her with a congenital birth defect. That is really crappy timing! I know that God has a plan and purpose for everything. I trust in his timing and his plan. I also have gotten to know this little person very well and I do not see her being the type of person to let any of this stop her! Many of the children born with this congenital birth defect never walk or talk. They are unable to hold their own head up and have to have feeding tubes put in to keep them adequately nourished. I think about that and I have to wonder......this little girl lived the first two years of her life in a type of poverty most of the world could never imagine! She slept in a straw hut in the middle of the jungle. She had no medical intervention at all! And yet here she is at three years old and she is walking (most of the time she is running and jumping and dancing!!!) and she is speaking full sentences. There has to be a plan for her life. I am convinced of that.

So we will see what the doctors have to say next week. Please pray for her and for the doctors to have wisdom. At first I was very discouraged and sad but I really believe that she is one tough little lady and with our prayers reaching her perfect creator she is in good hands!

I will update a little about Michelle later. Goodnight!

Atrial Septal Defect....... We met with the cardiologist this afternoon for an echocardiogram. Several doctors had noticed a significant heart murmur in Rose Nacheca. At first I was worried because we were supposed to be there only for the echo but after the technician was done she said she was going to put us in a room and have the cardiologist come in and talk to us. That was a stressful 20 minutes.

The news was not really that bad though. The good news....ASD is very easily fixed and does not even require open heart surgery! It can be done in a cath lab as a same day surgery. She would not even have to spend the night. The bad news...she is too small for the surgery. They would not do the surgery for 12-18 months. So it cannot be fixed during this visa.

ASD is a hole in between the top chambers of her heart. Most infants are born with this. The hole gradually closes on its own. At three years old they do not think that will happen now. The average hole is 2mm. Hers is almost 7mm. They want to do another echo in 6 to 9 months to see if there has been any change.

ASD would not cause her growth retardation so there is still something else going on. My question for the cardiologist (to which he did not have an answer) was if whatever is causing her growth delay could also have caused the hole to not close by itself. Michelle was born with kidney reflux. Kidney refux will (if it is going to) correct itself by age 5. After age 5 surgery is required to fix it in order to protect the kidneys. Michelle still had kidney reflux at age 5 and the doctors wanted to do surgery. Since Michelle was significantly behind in size I refused to consider surgery until she was the size of an average 5 year old. My instincts paid off, when Michelle was 7 1/2 to 8 years old and the size of an average 5 year old her kidney reflux was gone. My thought is maybe this could be the same for Rose Nacheca. Maybe once she grows a little maybe the hole could close too. I have no idea (nor does the cardiologist) if this is possible or not.

So for now they said that she can be treated like any normal 3 year old little girl. She can run around and play and she will be fine. They said that the surgery needs to happen before she is 5 years old or the hole gets to be 11mm. After 11mm the surgery would have to be open heart surgery. So this is better news than we were fearing!

We are still waiting for all of her blood test results, some of which could take a couple more weeks. But we are moving forward. Now that the cardiologist has cleared her the next major test she needs in an MRI of her brain and pituitary gland.

Thanks for the continued prayers. We are enjoying everyday with her and she is a bright spot in the house :) She learned to to say I love you, which is so sweet to hear!

Goodnight!

Greetings :) We have been very busy here the last couple of weeks. We have been catching up on life and trying to get things into a normal routine again after all of the chaos at the end of July!

We started getting some more test results back for Rose Nacheca. Last week she went down to the endocrinologist at Children's and had an x-ray and some blood work done. We also went to an orthopedic doctor last week as well.

The orthopedic doctor looked at the x-rays from Children's and remarked that you could tell by her bones that she had been under a lot of stress, trauma or has an underlying medical condition. She has lines on her bones, at first I wondered if they were breaks, that are called growth arrest lines. They can tell by looking at the x-rays that she grows differently. She does not grow for a while and then she will grow and then she stops growing for a while and then she will grow again. Each of these cycles creates one of those lines. This is exactly how Michelle grows as well when she is not on her medication. She would grow and inch and then not grow at all for 10 months or so. It would be interesting to see if Michelle too has growh arrest lines on her x-rays. Other than that he said that her spine is straight, her legs are not clinically significantly different lengths so no lift is required for her shoes.

We got the results of her x-rays for the endo today. Her bone age is significantly behind. She is 36 months and her bone age is that of an average 22 month old. For a normal 36 month old she should have had 53 growth centers visable on her x-ray and she only 40. For those of you not familiar with the endocrine world this might not make much sense so just trust me, this is delayed. Her IGFBP-3 levels were the lower end of normal but her IGF-1 levels were not back yet. They should be back by Friday.

Michelle also had her bone age done last week and those results were good as well. They measured her after being on Growth Hormone for the last month and she had not grown AT ALL! This was very disappointing for me but at the same time not surprising. Her body makes more than enough GH but not enough IGF-1. The growth hormone is simply to level out her blood sugar. But it is frustrating that we are going through all the work and pain of the shots and it is not working at all. We are still battling with insurance to get her Increlex covered so that she can start back on that. Back to the bone age, the last time that she had her bone age done it was only 2 months behind her chronological age. So thankfully her bone age is now behind 12 months. This is good because at least while she has not been growing for the past 8 months, her bones have not matured either. This means that nothing has been lost during this stint off the medication.

Hopefully this is not too technical. I know some of you reading are going through the same things and know what all of this means. For those of you who don't sorry :(

Other than that Rose Nacheca got to experience her first taste of fair food! She loved it all, the chili cheese fries, corn dogs, corn on the cob and by far funnel cakes were her favorite! She is up 1 1/2 pounds now and doing great! Her vocabulary is growing so much everyday. She constantly makes us laugh with the things that she says :) She is even starting to make friends with the dogs!

Thanks for the prayers! Please pray that Michelle could get her Increlex quickly or it will be a very rocky start to the school year as her blood sugar adjusts to the medication!

Let the testing begin.

Rose Nacheca continues to adjust to life in America beautifully! She is saying so many new words everyday!

She goes back to Children's tomorrow afternoon to start some tests. They are going to do some blood work to check for chromosome abnormalities that could explain her size. They will also be testing her IGF-1 and IGFBP-3 (that is what Michelle is deficient in.) Both Michelle and Rose Nacheca will have x-rays tomorrow as well. It is time for Michelle's annual bone age and Rose Nacheca will have an x-ray of the left side of her body to look at the growth plates.
Thursday she will go to the orthopedic doctor to look at her legs. It looks like one of her legs and one of her arms are longer than the other. I want to buy her some tennis shoes but if the difference is significant enough she will need to have a lift built into the shoe of the shorter leg. This would help with her spine as well.

There was a problem with our insurance AGAIN so Michelle is still only one growth hormone. She is still doing great on it but we would really like to get the Increlex started up before school starts so that we can deal with the blood sugar issues as she adjusts here at home rather than at school!

Thanks for the prayers. We are all enjoying watching Rose Nacheca experience all of these new things! At the same time we are showing her pictures of her family at OLTCH everyday and she loves seeing them! Speaking of OLTCH please pray for them. They got heavy rains and it flooded them a bit. Their generator went underwater so it is not working. Without a generator they do not have electricity or running water. Living in Haiti it is hard to find a new generator. God will provide though I am confident!

Little Rose Nacheca is adjusting to life in America just perfectly! She loves to laugh and dance. She tries to be silly to make us all laugh too! She has really been a bright light in this house all week!

Most of you know that the US Customs and Border Protection extended her stay in the United States 6 MONTHS! God's hands have been all over her little life and this situation and it is just amazing to see how he has opened doors and peoples hearts all around her. We are in awe!! Thank you to everyone who has been praying for her. The prayers are working!

She met with a lot of doctors this week. We got some good news and some bad news. The good news is that she tested negative for HIV and Hepatitis. The bad news is that she has a significant heart murmur. Her endocrinologist wants to make seeing a cardiologist a top priority. He really believes she has a congenital heart disease. While that can cause slower growth, it would not be to the extreme at which she is failing to thrive. So she definately has other issues happening at the same time. He was very reassuring though and said that this could be treated, but not in Haiti. So our first priority has been getting a good look at her heart. They ordered an echocardiogram and we got some referrals to a pediatric cardiologist.

On a funny note, I am not very good at dealing with her hair LOL! Our neighbor helped us out with that and tonight we met two awesome women who do braiding. They came out and did her hair so that she would look beautiful tomorrow when we take her to church to meet all the people who have been praying for her and supporting her OLTCH family. They were christian women and they were just amazing. They even did Michelle's hair while they were here. They said that they would be happy to do Rose Nacheca's hair for free anytime!

Speaking of OLTCH please remember to keep them in your prayers as well. The work that Greg and Jasmine do in Haiti is such a blessing for those little children!

Goodnight!

Praise God!!! Rose Nacheca finally made it to the United States :) She left Haiti on Friday July 23rd and arrived at the Magic Convention in Chicago on Saturday July 24th! She was able to meet with a Pediatric Dentist and one Pediatric Endocrinologist who took MANY pictures of her to send to geneticists and an internation adoption specialist trained in identifying conditions based on physical characteristics.

They agreed that she definately has some major issue and they are going to help us figure out what it is. This is very great news!!!

She will meet with an endocrinologist tonight who specializes in a very rare and unique disorder, Russell Silver Syndrome. Rose Nacheca has some characteristics of this but not all. This doctor can usually tell just by a physical exam whether or not this is what is wrong or not.

We will head home tomorrow and start a series of doctors appointments for her there!

Update on Michelle: Michelle started her growth hormone therapy last week. She is doing great! She was very concerned about the pen device used to give the growth hormone. Until now all the medication she has been on has been given through regular syringes so this was a new thing for her. After much objection on her part she tried it and really likes the way it works.

Once we get home we will start the Increlex again. We did not want to worry about the blood sugar issues that she deals with while using Increlex while we were traveling.

Thanks so much for all of you who have been praying for our situation. The prayers are definately working. The next step we have to deal with is to get Rose Nacheca's visa extended. The Haitian government was not very generous with the time they gave us with her. Her visa is currently only for 10 days. This is NOT enough to get everything done that we need to do! It took 5 years for us to get an accurate diagnosis for Michelle. But now we are very well connected in the endocrine world and have many doctors on board and ready to help. The senator's office is ready and willing to help us get the visa extended. So keep praying that is as easy as they made it sound!

Thanks again! I am going to go outside and blow bubbles with my two favorite "Magic" girls!

This is my first experience with blogging. I am sure it will take some getting used to. I decided to start this because I thought it might be a good way to keep everyone connected with the exciting things happening.



We first became aware of the world or growth disorders when our daughter Michelle was born in 2000. She was born in the 50% for height and weight and appeared to be perfectly healthy. After she was born it became increasing obvious that something was not right. She remained very small. At her 4 month check up she had fallen to the 10% for height. Slipping percentiles became the normal until, at 11 months, she was completely off the growth chart. That was a time of great worry, especially for me. Growing is one of the most basic of functions and when your child fails to acheive this it can be very very scary! Children eat, sleep and grow. Most of us take this for granted and never have to give it a second thought. But as we found out, sometimes it is not that simple.



We spent the first 5 years of her life going to doctor's appointments, specialists (endocrinology, gastroenterologists, orthopedic doctors, kidney doctors and allergy specialists) and spending many days at various hospitals having tests. It was a very frustrating experience for all of us. No one wants to see their child hurting. Michelle was so incredibly tough. She got so used to IV's, every stomach flu required IV fluids because she had absolutely NO weight to lose.



Not only would she not grow very much but every fraction of an inch that she would grow would cause so much pain! She would scream in the night and we would have to hold ice packs to her legs and give her pain medications.



Finally when Michelle was 5 years old we got the answers that we had been praying for, a diagnosis. Michelle was diagnosed with a rare disorder called Insulin like growth factor -1 deficeincy. The relief of finally having a diagnosis was quickly overshadowed with the reality of the treatment plan. Michelle requires shots every day to keep her growing. She started on a trial of Growth Hormone, the easiest of possible treatment plans. This was unsuccessful. So we tried a once a day shot of IGF-1 replacement therapy. She had an allergic reaction to this so we had to discontinue that as well. Next we tried a medication called Increlex. This required injections twice a day. She was on this treatment plan for about 3 1/2 years.



Michelle grew very well on Increlex. Her growing pains stopped and she made it on to the growth chart for the first time since she was less than one year old. Unfortunately the side effects were a major issue for her. Due to severe hypoglycemia she had to stop taking the medication. After 7 months we recently recieved approval from our insurance company to start a combination therapy of growth hormone and Increlex. The growth hormone should regulate the blood sugar and help her growth velocity. We will be starting this therapy within the next 10 days.



During this journey, we have hooked up with many wonderful people. The Magic Foundation in Chicago has been a source of great support for us. Since this is a very rare disorder we are all learning together. I became the Division Consultant of the IGFD division several years ago. Helping other people dealing with the same issues as we are dealing with Michelle has given this experience some sort of purpose or meaning.



The other exciting adventure we are working on is helping a little girl named Rose Nacheca (everyone calls her Rodnashka). Rodnashka lives in Leogane Haiti. She came into our lives because Dan went to Haiti to visit an orphanage with our pastor and a friend from church last September. Dan is a board member for the orphanage. He came home and told me about a little girl who he was certain had a growth disorder like our Michelle. I never thought much about it until I met the missionaries (Greg and Jasmine Martinson) who run the orphanage in November. They had pictures of the children in the orphanage and when I saw a picture of Rodnashka it practically took my breath away! She looked just like Michelle, obvious complexion differences aside. They could have been twins. When I showed the picture to Dan he told me that was the girl he had been telling me about. I knew right then that I had to help her. My heart felt an immediate connection to her, something that I have never been able to understand really. We decided in early January we were going to try to get her here on some sort of medical visa and help figure out what was going on with her. Then January 12, 2010 happened. Her little world was shaken, houses fell all around her, and millions of lives were changed in an instant. The whole family at OLTCH (Operation Love the Children of Haiti, the orphanage she lives at) were totally unharmed. But, our focus then had to be their survival. Dan traveled back and forth many times in the wake of the earthquake. Each time he would spend time with her and bring back pictures of her for me! I traveled to Haiti in April and got the opportunity to meet her and spend Easter weekend with her and Greg and Jasmine and the OLTCH gang. I have prayed for a way to get her here everyday since then.

The Magic Foundation wrote a formal invitation for Rodnashka to come attend the annual convention this July. We have worked out arrangements with our pediatrician to start some blood work, she will see an endocrinologist, pediactric dentist who specializes in children with growth disorders, and possibly Shriners.



Many people in Haiti have been working very hard to get everything lined up. We are coming down to the wire now though. Her passport is done, but as of the last time we talked to anyone it had not been picked up due to computer problems in Port Au Prince. We are praying very hard that God would make a way to get her here before the convention.

Hopefully this blog will be a way for us to keep everyone updated on everything that is happening as well as to keep our friends with children with similar disorders informed on how this new treatment is going. The endocrine world can sometimes be a scary and lonely place to be and it helps to know that you are not going through it alone.