The Adventures of a Video EEG

First thing Monday morning, I arrived at the house to meet Aldina, Adis and Anes and we headed off to the hospital so that Anes could get all "wired up" for the video EEG. Tina, the interpreter who has been helping us met us there at 9:30 am. It was off to registration first, which went surprisingly smooth, and then to the EEG technician room for placement of the electrodes. Anyone reading this who has experienced a VEEG with their own child (or seen a hook-up done) knows what an unpleasant experience this can be for a young child. Anes was no different. He did NOT like it one little bit. Of course he would not...he could not understand what they were doing to him. Prior to this, Anes' EEGs were never more than 20 minutes long in Bosnia, thus they did not require having the electrodes glued down to the head. Once all the leads were placed and Aldina could pick him up, he calmed down a great deal. But he was tired after all that commotion! I have to admit, he looked pretty darn cute with his little alien netting on though (see for yourself!).

After this, it was off to the overnight room for the family. The plan was to record activity for 48 hours. Dr Cohen stopped in to make sure things were going well and see if there where any questions. The Pediatric team also came in and took a full history on Anes to make sure he was all well from the general pediatric/child health side. Since Anes was asleep, they decided to come back later to do the physical exam...which was a good thing. Tina stayed until Adis and Aldina were comfortable in the room and knew the protocols, etc.. The hospital's PR/Communications team came in and talked to Aldina an Adis about their story and that they would like to do some internal video taping, in hopes that everything would go well and they would be able to share the story nationally to help other families and spread awareness. Adis and Aldina understood the purpose and were gracious enough to easily agree, and they learned that the crew would be in about 5 pm to start filming material when Dr. Cohen would be back to talk to them. Aldina asked for Tina and I to be around at that time if possible and we both agreed. By the time I returned at 5 pm, Anes had woken, was happy and already showing those with the camera's just how special he is. He definately had an effect on those people!

The filming of Adis, Aldina, Anes, and Dr. Cohen (with interpretation provided by Tina) appeared to go very well. The PR/Communication team really seemed to be getting excited about what they were seeing and learning about this child and his family. I had the chance to talk to those in charge and answer some of their questions. Eventually, they took Dr. Cohan aside and did a short interview with him about the surgery...what it is, why it is important, what it can mean to Anes, what happens without it, etc. They then also asked me to go on camera and share how the family got here...how they became connected with me, The Hemispherectomy Foundation, and ultimately Dr. Cohen and Methodist Hospital. They also wanted to capture the perspective of a parent who has been through the surgery and what it means to families. It was an honor to take part in that and I hope that I did all of our hemi families justice.

During this time, Adis and Aldina did learn that Anes is having more seizures than they could see with their eyes (clinical seizures vs. subclinical seizures). That in fact, he is having very little non-seizure time. Aldina shared that this was hard to hear and that they didn't know before. We talked about how this was not a surprise to the medical team though, as most HME kiddos have as many, if not more, seizures that can't be seen as can be seen with the eye. And we talked about how this information just made it more apparent that they are where they need to be and doing the right thing for Anes. The other thing they learned, which is what many of us had been holding our breaths to hear, was that so far it appeared that the activity was only coming from the right HME side. They would learn more about the EEG the following morning when Dr. Patel, neurology, was scheduled to come talk to them.

All in all, it was a good day, though Anes might strongly disagree :) Good news and no surprises. Not sure you can ask for more from a medical standpoint!

After getting some giggle, smile and play time Anes, I headed out so that they could all settle in for the night and get some rest. Tina and I said that we both would be back the next morning at 7 am when Dr. Patel would be in to talk about the EEG in more detail.

The hospital took great care of them all day, even making sure that Adis and Aldina had food and that Anes' needs were able to be met...I'm sure in so small part to Dr. Cohen and the expectations he made clear to hospital staff!

So, tomorrow is another day...but all things are looking good! Praise God! Keep praying for everything to go as hoped and planned.

Peace,
Holly

The First Days

It has been a busy few days since Anes, Adis and Aldina arrived in Indianapolis...but I have thoroughly enjoyed every minute of it. I thought you all might like to have a quick summary of details regarding the last few days...so read on to see what they have been up to.

After all the commotion of Thursday's arrival, they were able to get a little rest and go out for an early dinner with Caiden and I at CHAMPS in the downtown mall on Friday late afternoon. We also swung over to Brookestone to pick up the "European to American" adapters they needed for the laptop and cell phone they brought with them to stay in contact with family back home. I was glad that it turned into an easier task than I thought it might be...success at the first store we tried! We then headed to a big box store to pick up some food items for them to have at the Ronald McDonald House and a couple more pieces of clothing since their bags had not yet shown up. Then it was back to Jon and I's house so Anes, Adis and Aldina could meet Avery. We enjoyed our time together and getting pictures of the kids together. It was so cute! Anes can steal your heart as quick as lightening! He will "kiss" you back when you make the kissing sound for him. I mean...there is not a heart he won't melt!

By Saturday, 2 of their 3 bags had arrived...so they had a majority of their "stuff" finally. They came over to our house again, this time for dinner and more time together. They showed us many pictures of Bosnia on our home computer and share more facts and information about their country and culture. Did you know that the world's largest pyramid is in Bosnia and was only discovered a couple years ago? We were amazed to learn so much from them! Bosnia is a beautiful country and so are it's people. After dinner and our time together, we made some calls to find the still missing 3rd bag. Within a couple of hours, it too finally showed up. So, the shoes and such made it after all!

For Sunday, we made plans to go to the zoo and we had a great time! We enjoyed a long walk from the RMH to the zoo. We took time to see the Oceans, Plains and Forest exhibits and to talk and learn even more about each other....and to enjoy some ice cream cones! Anes, loving the milder weather that Sunday brought and the walk in his stroller, slept through all of the zoo! He was adorable doing it too! We then walked back to the RMH, stopping to takes some great pics of Adis and Aldina with the Indianapolis skyline in the background and some great group shots...and of course several more cute pics of Anes. We took a short break back that the house, so Anes could eat and we all could rest or legs, and then we went out for pizza at Jon and I's favorite Irvington pizza spot. It was such a beautiful evening that we sat outside and enjoyed the evening together. When we finished dinner, I took them back to the RMH and visited a little while longer. We talked about the next day, the EEG, what to bring, etc... and the schedule for the morning. Aldina invited me to help her give Anes a bath, which was a lot of fun even though he doesn't like the bath time much :) After he was all settled in his PJ's, he and I played for a few more minutes, because I can't leave until I get a few Anes' giggles and a "kiss". We all said good night then...knowing that tomorrow was going to be an early morning and busy day.

It has been nothing short of amazing...to learn more about Anes, Adis, Aldina, and Bosnia these past few days. They are easy people...kind, caring and proud of their county. Just as we are here. In our talks, we have done a lot of comparing and contrasting our countries and cultures. It has been eye-opening and educational. They have shared so many insights and comments with me, that I can not put them all down here...but instead offer just a few. They are amazed at the outright kindness that they have experienced from the people here in Indianapolis...the staff at the house, strangers at the stores and on the streets. They have commented how different it is to go out here than at home in Bosnia, because people here do not stare at Anes or Avery and because the restaurants went out of their way to help meet the needs of our children in their big strollers. At home, they do not take Anes out to places like this. They shared that the doctors are different here...more kind and caring. In Bosnia, many of the doctors are corrupt and expect gifts or money to treat them. They we so surprised to see Dr. Cohen at the airport...and could not believe that this type of caring was coming from a doctor they did not know. There is no public schooling for children with special needs. Only private ones, but only in bigger places like Sarajevo...not at all in the small cities. There are no places for weekly therapies. Aldina does with Anes at home what she learned from the little bit of physical therapy he received in Kosevo Hospital. Any equipment he has, they pay for...as there is no insurance to cover those things. There are no Medicaid waivers, Medicaid disability, etc. Yet, none of this is shared in a complaining fashion...just an "it is what it is" way of explaining and a real proudness of who they are and of Bosnian culture. It makes my heart hurt for Anes, because he deserves what my child gets...what any other child here in America gets. Still, he knows love. Profound love. And he is so well taken care of...every need met. Of course, that is not a surprise. Is there greater love than that which brings parents on a 15 hour journey, across the seas, to a foreign land, in the name of hope and for a chance to save their child? I doubt it.

It is importatnt to note that, for all we have that is good and right here in America, they too have things that are good and right in Bosnia. There is more emphasis on family togetherness and less materialistic things. Because they do not have so many excesses, they seem to appreciate what they have better. It was interesting to hear from Adis that the plate of food that he received at CHAMPS was as much food as they eat in a day. Of course, we all know that American portions are out of control at most restaurants, but this observation made me think about the excesses that we "enjoy" here, that ultimately, are not always in our best interests. The bottom line is that they are happy, caring, loving, gracious, proud and very easy-going. A great lesson for me....for many. Someday, I hope to get the honor of visiting them in their home and learning even more of Bosnia and seeting Anes growing and developing.

Thank you, sweet little Anes, for sharing your journey and for sharing your parents and your country with all of us. I feel so privileged to know you and to know the strength and love of your family! Be blessed little man...I love you! May you have the chance you deserve, that your parents deserve.

Everyone, please continue your prayers in earnest for Anes in the days to come.

In Hope,
Holly

OFF TO THE ZOO

Well, I certainly have lots to report from the last couple of days, and I will do that this evening. I have not had much time...but we have been having a great time getting to know each other and spend quality time with each other. I have lots of pictures to share from the last two days as well, and will do so later this evening.

I just wanted to post a quick bit of info, to let you all know that things are going great. We are actually heading to the zoo in just a couple of minutes. Aldina had never been to a zoo, and Adis only once in Kosevo I believe. Anes has been a little angel, and I have adored getting hug and kiss him. He even "kisses" you back! So much fun!

I will update with more details and picutres later tonight!

Have a blessed Sunday!
Holly

A SAFE LANDING

THEY ARE HERE!!!! They are beautiful, kind, wonderful and so much more. But, I suppose most everyone reading this is not surprised to read that :) I can not express my happiness right now...as there are not adequate words. Seeing them, their faces, in person for the first time...I will never forget that moment! The site of this child and his family...that I have spent so many months praying for and worrying about...very emotional to say the least.

Dr. Cohan and his lovely wife Isabelle came to the airport to meet them with me! What a great surprise that was! Such a kind man and equally kind wife. We were blessed to have an amazing woman named Tina that came to translate for us (at no cost!) and she stayed for the duration. What proof of the kindness and compassion that exists in the world. Thanks again to the Language Training Center of Indianapolis for providing this assistance and for caring about this family and their story.

It was a long journey for them today. They left Sarajevo at 7:00 am Indy time, arrived in Indy at 10:00 pm, and finally were in their room at the RMH at 1:20 am (the next morning). The only problem in the whole day was that their luggage didn't make it here with them. Seems it never made the plane change in Munich, Germany. This was discovered when they landed in Chicago, where they were told to make a claim once they landed in Indy. But, no worries. They certainly took it all in stride and put their trust in us. Isn't that amazing? That takes an incredibale amount of strength and courage! I don't know if I could do it as well as they seem to. I am so proud to know them...and so proud of them...and honored to be a part of this journey of theirs!

At the airport, we all sat down with a coffeee and spent time talking and getting to "know" each other, filled a claim for the baggage and then we made a trip to the nearest 24-hr Meijer store to get a few clothes, toothbrushes and toothpaste, and a little orange juice to get them through the overnight and morning. We made it to the Ronald McDonald House by about 12:45 am and we made sure everything was in place there...and that they had everything they needed. When we left, Anes and Adis were sleeping and Aldina was hopefully working her way towards that too. I can't imagine how tired they must have been, yet they kept going as long as they needed to. Anes was awesome tonight. To think he had to spend all day on planes and was now in a new land with people he didn't know "oohing" and "aahing" over him in a foreign language. He humored as as best he could, but he was SOOO tired. After a diaper change at the airport, he went right to sleep and continued to sleep through all the rest of the activities. I just kept staring at him and smiling. He is simply beautiful...and I feel so blessed to know him and his equally beautiful parents.

It is now 2:30am and I am at my own home. I am in awe of what Adis and Aldina are doing for Anes. What strength, faith and trust they have. I am proud to know them and I am so proud of what they have done to get here. May all their hopes and dreams for Anes be realized...I am praying so. And I know so many others are praying that as well! Please join us in that prayer!

Tomorrow will we go out for groceries and anything else they may need. And we will spend more time together...and help them prepare for the days to come. They want to meet Avery and my family...and I am so excited to share my family with them.

For now, I must sleep. More to come tomorrow.

In contined hope and prayer,
Holly

Anes Arrives Tonight!

After 11 months of chatting with Anes' uncle Asmir, I finally get to meet the child I have been hoping and praying for for so long, and his loving family. In less than 2 hours from this moment. I can not wait! I have butterflies in my stomach. I am leaving for the airport in just a few minutes. Can I ask you to say some prayers for this family? Pray that they arrive safely and pray that we are all that they hope we will be for them.

I want to state a special thanks to the Language Training Center in Indianapolis, for caring enough about this child and his story to assist us tonight with translating at no cost to us. What a kind and generous gift. Our gratitude is immense.

I will post more later tonight, so that those following Anes' journey can know that the family arrived safe and sound and is settled in for the night in their room.

Thank you for caring about Anes!

Cheers,
Holly