Our new Boy!!

Our new Boy!!

Monday, March 26, 2012

GI Stas

Well I have tried very hard to update this blog more than once a week, but it is very difficult. There are so many details I want to include and sometimes that just takes a little time. Stasik is still doing very well and we have received more information that has been very positive for the most part.
In the last blog we had recently had his heart checked out and all signs indicated that it was healthy. Since then we have had no changes in that condition, however, we have still had a lengthy list of other items to get checked out. Almost everything we were given from our facilitators had a Ukrainian document and one that was translated to English. The “important documents” that were not translated were of course the medical information and history. We asked several times to have them translated when we were there, but we were just told that we would need to get it done when we were stateside. To me this was like taking a skydiving lesson where they tell you how to put the chute on and get in the plane, but don’t tell you how to pull the cord until you are 1,000 feet above ground. This health information was very important to us; more important than some of the other papers we received. If there were any major concerns, we sure did not want to miss them or be too late getting them resolved. For us it was like starting from scratch. We could not answer any questions about him at all; in a sense it was like he was a new born that had unexplained surgeries in the womb…geesh! We just had faith in God and prayed that we would get to everything in a timely and safe manner.
While we were at the cardiologist’s office, we found a nurse that spoke Ukrainian and asked her to try and decipher the medical documents we had received. We soon figured out why no one in the Ukraine would help us out. She determined that some of the medical documents were in fact written in Ukrainian, but most of them were in Russian. All that she could really determine is that Stasik needed all of his shots. Beyond that she could not say anything for sure. We left copies of the documents with the office and hoped that someone would be able to figure it out a little later. In the mean time we went to our pediatrician to get a full round of shots; 3 in one leg and 3 in the other. Poor guy! Wouldn’t you know it; he cried…I have to say that on this one, though, I don’t blame him. I am not a fan of shots either.
With a heart check and a full round of shots, we waited for our referral to go in for our GI appointment. We finally saw a doctor last Thursday. Unfortunately, we had to make two trips to Houston for this one. Thursday turned out to be a consult visit, but we did get to meet with a nutritionist that gave us some good information. The original thought based on surgical scars and vomiting regularity and intensity was that we were dealing with reflux (GERD). Reflux is usually gone when infants hit 11 months of age, but with children that have DS, the doctor said it is very common to see it last longer. That sounded great, but we wanted to know for sure as soon as possible. We were told that we would come back in a few weeks, but with a little sweet talking, I was able to get that changed. One of the nurses (Betsy) hooked us up with an appointment the very next morning. I had to get up early, but worth it so that we could get some answers.
Earlier in the week, Stasik and Debbie were at a friend’s house when Debbie was changing a dirty diaper. Our friend’s niece, who is an EMT, noticed that the poop had a very strange, but familiar smell. She had worked in and been around a lot of nursing homes and the smell was the same. She asked if we had gotten it checked out and Debbie told her not yet. We had some concerns about it, but were still waiting to see the GI doctor to ask. When we went in on Thursday, I made sure I transported a sample with us just in case they could use it. We wanted them to check for Giardia and C. Diff (Clostridium Difficile). These are two species of bacteria that cause intestinal disease and are very common in kids coming to the U.S. from Eastern European countries. C. Diff is caused by spending a lot of time in a hospital and taking antibiotics. It can cause diarrhea and release toxins that can be life threatening if not dealt with. Giardia is most common in animals, but is seen in humans when they come from poor sanitary conditions. Based on the smell, which is similar to mothballs, we think it is C. Diff, but we are still awaiting those results. Either one can be treated with medication and will clear up rather quickly.

On Friday, me and Stas got up at 4:30 and hit the road by 5:00. We had to be in the doctor’s office by 7:15 and I wanted to make sure there was no way we could be late. We arrived around 7:00, found our office, and checked in. Stasik was not allowed to eat before the tests and I was really concerned about this whole lack of food situation. Lucky for me it was so early in the morning that he just slept the whole way. By the time he began to get hungry, we were in the x-ray room sucking down barium contrast out of a bottle. The doctor had scheduled an upper and lower GI test to try to determine if there were any obstructions or narrowing’s in the GI tract that might be causing the food to come back up. Worst case scenario was surgery and best case was medication for GERD. We had to stay in the office until the contrast solution made it all the way through his digestive system into his colon. This required a lot of waiting and taking new x-rays every 30 minutes or so. Stasik was a trooper!! He did not cry much and did not seem to get really hungry.
You know when you take your car to the shop because it has been acting up for weeks? Then, when the mechanic is looking at it, the symptoms never even occur the entire time he is examining it. Then you drive away and go home, only to see the exact same symptoms the very next morning. I do not know what this “Car-shop mechanic fallacy” is called, but it happened to us that day in the doctor’s office. I argued up and down that Stasik would probably throw up the barium and would be upset because he was starving. I just knew that it would be a tough day and only hoped that we would be able to do all of the tests without any issues. Well of course, I was wrong (Don’t tell Debbie I said that). He never cried once about food and did not throw up a thing the whole day.
The doctor doing the x-rays saw a few inconsistencies, but said overall it looked good. He wanted to consult with our GI and heart doctor to rule out any questionable issues. We drove home and fortunately got the results back that afternoon. Dr. Wong said that there were no functional or acute GI issues at all to be concerned about at this time. There was some narrowing, caused probably by the recent surgery, but that was it. The doctor hoped that it would correct itself over time and we would see how things are in a couple of months. He said he believed it was reflux and gave us a prescription to help with that. We were very excited with the news…of course on Friday he threw everything up again…how surprising is that? We are supposed to be getting his poop results back very soon and that should conclude the testing for awhile; now we can focus on the teaching and therapy that we have really been anxious to do.
On a non-medical note, Stasik is outgrowing his clothes and now weighs 17 pounds. Pretty soon he will be able to sit forward in the car and watch Mickey Mouse with his brother. We were in Central Texas this weekend and took some time to get some pictures in the bluebonnets that take over the texas roadways this time of year. Stasik was mesmerized by them. I do not think he has ever just been able to sit out in the sun and just be free and surrounded by such a beautiful sight. After his fascination subsided a bit, in true Stasik fashion, he tried to see how a couple of them tasted. Maybe that was what was on his mind all along and he just did not know where to start. Still trying to figure out what goes on in that mind of his sometimes. He met his Nana (my mom) this past weekend and hopefully in the next month will finally meet the full gamut of family he has here in Texas. I am sure they are all anxiously waiting and they will get to see the new improved version we have been working on the last several weeks. Praise God!!

Saturday, March 17, 2012

Three Weeks Time!

Well we have officially had Stasik home for three weeks and he is really starting to come into his own. I have not been able to really sit down and write a new blog post because the two boys have kept us very busy. Since the last post we have worked very hard to get Stasik settled and in a routine. As one might imagine, it has been very hectic for our family trying to get both boys to daycare and school while also getting ourselves to work on time. We have had a friend of ours keeping Stasik the last few weeks while we get the remainder of his health checks done. Starting next week, though, he will go to school with Carter. Carter attends a school for children with DS, children with autism, and normally developing children. It is a great mix of kids and very good for his social, motor, and intellectual development. Carter enrolled in the school right before our trip to the Ukraine and he just loves it. Since Stasik came home, school has kind of been Carter's get away. It is his old normal and a place where he has not had to share time with his brother. It will be interesting to see how the two do being together all day in a setting other than home.
Since he got home, Stasik has slept in a little bassinette next to our bed. We wanted to monitor him and make sure he is adjusting well before we moved him into his room. We always know when he is up. It used to be because he would stem and rock the bassinette, but now it is because he will start talking and will gradually get louder until somebody picks him up. Stasik is a good sleeper, but he is always the first one up. We hope it is because it is like Christmas morning for him every day....where he is happy and he just can not wait to get up and open his daily gift of a new life. After we pick him up, he normally lays in bed with us for a little while and then it is up and off to start our day. When Carter wakes up he always looks for Stasik, but we are not sure what his reasoning is yet. We would like to think that like any brother he just wants to start playing with him and say, "What's up brother", but we think a little of it may be just to see if the new guy is still in the house. Carter may have thought that this was just going to be a short little slumber party and now is thinking somehow it has gone on a little too long. We are not sure which it is, but the more they are together, the more used to one another they get and the less we even remember about how it was before Stasik's homecoming. Carter is helping out a lot more and is beginning to spend time with him independently and with me and momma.
We have Stasik's daily feedings down to a science now and we have just about figured a way to get enough calories in him. His vomitting is very sporadic; we have to find the right foods and be very creative in how we mix in liquids and formula. Liquids seem to be the main issue, but are a necessity to keep him hydrated. Formula is still the best way to get him the nutrients he needs and try any way we can to get it to him. We have an appointment on Wednesday with a GI specialist and hopefully we can get it all under control.
On monday of this week we went and got his first round of shots to try to get him up to date. Poor guy had to get six shots in one sitting. It is so different to watch Stasik's reaction to things like this. Carter never cried about anything....Stasik is just the opposite. Food in sight...cry, food out of sight...cry, take too long to give food...cry, shots...cry...take temperature...cry, change diaper...cry; I just feel for him and what he has been through. I know that time will ease all of this, but I just want so badly to make all of the pain go away, physical and/or emotional...it just breaks my heart every time. Crying is definitely his mechanism for communication and when he begins to speak more or use sign language I believe it will subside quite a bit. He learned the words momma and dada very soon after we met him, but in the last three weeks he has also learned to say Carter and Bubba. It is so neat to watch Carter try to help him talk and use sign language. When I try to get Stasik to say and/or sign "more" or to clap his hands, Carter will show him how to do it and then if he does not mimic it, Carter will grab his hands, tell him what to say, and then just show him how to do it. He is going to learn a lot from Carter and it is neat to watch Carter take an active role in his development.
Stasik has officially gained 4 pounds and is weighing over 16 pounds now. He has grown half of an inch and is wearing 12 month clothing. He just looks and acts so different now. He can almost sit up on his own and can now stand (assisted) for very long periods of time. He just smiles at us all day and it makes us feel so good about where he is right now. We thank God everyday for this opportunity. Hopefully we will get good information on wednesday and we can start giving him the stuff he needs to really put on some more weight.

God Bless!

Tuesday, March 6, 2012

A Hearty Day!

The last few days have seen much improvement for Stasik. He is getting stronger every day and is now starting to keep more food down consistently. Over the last week we have learned a lot of new information, but yesterday was the most revealing day to this point.
It is so difficult for adoptive parents when they bring their children home from another country. The adjustment is tough for both parties, but unlike bringing home a birth child from the hospital, there are so many unknowns with adopted children. All of the medical records we received from the Ukraine were in Cyrillic. This left us with the inability to answer questions about his previous condition and also with a lot of questions ourselves. Because of this, people in the medical profession tend to be a lot more cautious and conservative when checking Stasik out. Although I am glad they are taking precautions as they run tests and gather information, it certainly creates a longer timeline to reveal the answers we are anxiously looking for. We have a long list of questions and concerns and slowly we are getting answers and starting to learn more about our new son.
Yesterday we took Stasik to the Texas Children’s Cardiology Unit to try and determine what and if anything was wrong with his heart. The last doctor Debbie spoke to in the Ukraine told her that the problems were too severe for him to have a prolonged life. We obviously wanted a second opinion.
It seems that the doctor we met on the plane followed through with his promise and I believe he went a little higher than we expected into the administrative chain of command. We were asked a few times who it was that we knew to get Stasik in so soon. We told them we met a doctor on a plane, but I believe that God played the biggest part.
It was a tough day for Stas. He went through the gauntlet of cardiac tests and was very stressed at the end of the day. We hated to put him through all of that, but we knew we had to have answers. We spent most of the day going from room to room and driving to and from Houston. In the end, though, we got answers to medical questions and our prayers. The doctor in charge of Stasik’s case came in and explained that based on the translation of his medical records and the tests that were run, they were able to piece together his past and his current condition. Stasik had a double aortic arch, a hole in his upper left chamber of his heart, and a Patent Ductus Arteriosis (PDA) that did not close on its own. We have had experience with the PDA as it was a concern with our first son Carter as well. Fortunately, his closed weeks after birth and no further medical attention was needed. The other issues we were not familiar with, but learned more about while visiting with the cardiologist. What we found out was that all of these issues had been treated and repaired appropriately......Chalk one up for the doctors in the Ukraine. As the doctor continued to talk, I kept expecting a but….., it never came. Stasik was given a clean bill of health; we were told that we should not have any more concerns from a cardiac standpoint and to come back for a follow-up in a year. I literally wept right there in the hospital, tears of joy and relief. I thanked God for his mercy and for guiding the hands of the Ukrainian physicians. Our prayers had been answered and it was one more thing we would be able to move past and focus on our next item of concern.
One other bit of information we found out was that Stasik is in the bottom 3% for size. We knew he was small, but even with the weight he has put on in the last two weeks he still has a lot of catching up to do. The cardiologist, only with prompting, finally gave us an internal referral to see a GI specialist. After telling us where Stasik ranks statistically we would have thought he would be more concerned about his lack of size and perpetual vomiting. He wanted us to get a referral from out pediatrician first. After we told him that had been done already, he told us to follow-up on that referral and try to get in as soon as we could. I told him that I needed a referral from him and that it was the only way we would be able to get an appointment in a timely manner. He finally agreed and hopefully we will hear something soon. I know that doctors have to follow protocol and go through an order of operation, but with his extreme diminutive body size, I would think that a doctor would maybe place a larger priority on getting him in immediately. I know that they deal with a lot of kids that are probably much worse off, but this is the father coming out in me and my boundless concern for my son. That is one thing that will never change.
Stasik just seems so happy right now. He is always smiling and kicking his feet. He loves being held and like most toddlers is starting to become pickier about the food that he eats. When we first got him home we thought he would eat dirt if we put it on a spoon. Now he turns his nose up at some of the unflavored foods that we feed him to get him some extra calories. To me this is a good sign that he understands he has choices and that there is always more where that came from.
He is such a busy body and is all over the place. He hates to sit still and is constantly in motion. He army crawls all over the house and is starting to follow us around. He used to stay in one place, but now he seems to want to be where the rest of his family is. We started putting him in an activity jumper with a bunch of little toys around it. He has to stand up in order to reach them and play with them. Our hope was he would begin to stand more and strengthen his legs. The first few days he would just lean from side to side and we had to place a small pillow in front of him so he did not fall over. After a couple of days we were able to remove the pillow and he was able to almost sit up by himself. Today, he actually started jumping while pushing up and down with his legs. He did this for half an hour until he finally wore himself out. He is having so much fun and once again he surpassed our original expectations.
Watching Stasik achieve and progress every day is just so rewarding. You can tell he wants so badly to be like his brother and I have no doubt that as he gets stronger and healthier he will do just that.

Thursday, March 1, 2012

Day to Day

We are still waiting on an appointment to Texas Children's Hospital. We thought we would get in pretty soon, but have not received an official date yet. We have some people working to get it as soon as possible but as of now we are still in standby mode. In the meantime, we continue to do what we can to try to get Stasik up to speed. He is continuing to gain weight even though he has now had three straight days of vomiting after feedings. He seems to keep solids down pretty well, but the formula just keeps coming back up. We are trying to base his diet on the assumption that he will lose some of it. We are able to maintain a high calorie count and it is definitely making a difference in his energy level and everyday activity. He is sleeping well at night and during the day and is starting to fill out physically. He has better color overall and he has lost the dark areas under his eyes.
With increased energy comes a lot of redirection. Sometimes, he is not very delicate when playing with us or Carter. He likes to grab hair, ears, noses, and really anything he can get his hands on. A couple of times he tried to nibble on my ears and I had to correct him. I think he is so excited about his whole new world and exploring it that he just doesn't know how to go about it yet. He is dong things that he has never done before. You can see the excitement in his eyes when he pushes up to get his face closer to ours. He tries to kiss us, but doesn't quite know how. We usually wind up with some slobber in our hair or licks on our face, but that is ok with us. Sometimes he grabs Carter or crawls on top of him and he is not quite sure how to deal with that yet. Carter is so sweet and docile that he just usually moves to another location or just pushes him away. If Carter initiates the contact it is usually ok unless Stasik just wants more attention and that is usually when Carter uses evasive action. We knew that there would be an adjustment period and the two boys are still just trying to get to know each other right now while also sharing the same space.
Today Stasik fed himself with a spoon. After he showed me his ability to put food in his mouth I decided it was time to move to phase two. The last couple of days I have been trying to show him how to use a spoon. He still is not patient enough to get food on it by himself, but if I get something on there for him he will take the spoon directly to his mouth and eat. It is amazing how quickly he picks things up and it seems that every learned skill is starting to build off of the one before. He is doing a lot better at sitting up by himself and I do not think it will be long before he does so without any help. His core strength continues to improve and he does not want to just lay back all of the time now. He is standing with assistance for longer periods of time and now does this on his own without any pronpting. His leg muscles are getting stronger and and he just likes to push up and down until he wears himself out. It is obvious he just wants to start doing things and as he accomplishes more I think it fuels his drive to continue.
We weighed him today and he now weighs 15.6 pounds. Not a huge gain from Monday, but it is still a gain. With the amount of food he throws up we consider every pound a major accomplishment over where he was. I can not even imagine the amount of weight he will gain when we work out all of his gastric issues.
We feel very blessed for a lot of reasons. There are many other parents that we met while adopting in the Ukraine that have not had the success story we have had. We pray for them everyday; for patience and knowledge to help them through whatever difficulties they may be having. Some have adopted older children and they face additional challenges trying to help those children learn or relearn skills while also dealing with some more serious emotional and physical issues. We all have to remember that these kids are resilient; they are in a better place and over time will truly be able to live up to their full potential.

Hope to have more info in a few days!!