Continued Improvement

I get to hear from Asmir (Anes' uncle) often regarding Anes. He recently posted some pictures for me, to show how much he has changed and grown in these recent months. It is amazing to see! He is such a little boy these days - so aware and always smiling. All is well with the family in Bosnia. A recent FB chat with Aldina has my hopes up that they will be back here this summer to attend the Hemispherectomy Family Retreat. Oh my, that thought....the excitement it brings! I hope it will happen. I sure miss them...still...and I don't think that will change anytime soon.

Kisses to you, Anes.

Upcoming News Coverage

It's hard to believe that it has been almost 6 months since Anes and parents, Adis and Aldina, arrived in Indianapolis looking for "HOPE in One Hemisphere"...and now nearly 4 months since they returned home to Bosnia with a 'new" Anes - happy and progressing AND seizure free! In the two months they were here, I spent a lot of time with them - hoping with them and helping as well I hope. I can not put into adequate words what it meant to share in this piece of their journey. I feel a great bond with them and a great love for them. And I really miss them. It warms my heart to get updates on Anes and to see pictures of him happy and doing 'typical' things...like feeding himself. I pray each day that he continues to make developmental strides and never experiences another seizure. Afterall, that is the ultimate goal any parent is reaching for in putting their child through this crazy surgery called hemispherectomy. A huge surgery that at first seems so unreasonable and unfathomable to a parent, but which quickly becomes the best HOPE for a better life for their child. It takes any parent a lot of FAITH and TRUST to proceed. Imagine what it must have took for these parents to come to a foreign land and trust all these people they knew only through the internet or not at all! Amazing parents...amazing people...but the driver was their immense love for Anes and the need to have this HOPE for him. And what a team of people it took to make it happen...all for a boy they had never met but whom they felt compelled to help...to get his shot at 'HOPE in One Hemisphere'. Thank you, thank you, thank you to everyone who had a hand involved or played a role. What a gift YOU all were given...to be a part of Anes' story.

Which brings me to THE STORY...
I received word from my contact with Wish TV 8 in Indianapolis about the schedule for airing the local coverage of Anes' story. The local coverage will have interviews with myself and Jon and footage from our home and Avery as well as Anes in therapy. It focuses on the piece of the story that tells how Anes' family came to connect with myself, then the Hemispherectomy Foundation, and end up in Indianapolis for surgery. It focuses on the diagnosis, the connections of our familes, the value of helping others, etc. The first local coverage will air this Sunday night (Dec 13th) during the night cast. Additional repeat coverage will then air on Monday during daybreak news cast and at the 5pm news cast. I am sure that it will also be available from the website at some point as well (www.WISHTV.com).

The Doctors episode airs on CBS on Monday, Dec 14th (check www.thedoctorstv.com for your local listing for time and channel). This episode will cover Anes' journey through surgery, the surgery itself and it showcases Anes, his amazing parents (Adis and Aldina) and the wonderful neurosurgeon Dr. Aaron Cohen-Gadol (who performed Anes' hemispherectomy here in Indianapolis) on set. I have no idea what all made it into the final cut of the episode they are airing, but they took photage of Anes' from pre-surgery, during surgery, through initial recovery, etc, as well as interviews with the family, Dr. Cohen, Dr. Patel, the rehab team, myself, and others. They also had access to all the pictures I had taken from the time Anes, Adis and Aldina arrived through Anes' recovery. I'm excited to see this episode and see Anes, Adis and Aldina's beautiful faces again...it is hard to not miss them terribly. It is amazing to realize that they came here with Anes having more seizures than they even realized at the time and after the hard work and generosity of an amazing medical team and hospital and help from The Hemispherectomy Foundation, they got to go back home to their other child, family and friends and share the 'new' Anes. What a blessing!

If you take nothing else from this story...
Know that reaching out to others is the right thing to do.
Know that there is nothing monetary or even tangible that is as rewarding as helping another.
Know that great faith can move mountains.
Know that nothing is more powerful than love, especially love for a child.
Know that it doesn't matter the differences in your nationality, your faith, or your language...the hope and love in your hearts will connect you above all of those.

Blessings of the season!
Holly

No News is Good News

The saying is true...no news IS good news. BUT...I'm still sorry to have left you without any news for so long. Here's a quick summary of what's happened since the last update.

Anes' recovery and rehabilitation has gone remarkably well. Recovery was without incident or major concern. Aside from a few days of low to mid-grade temps, which are common post hemi, recovery really was smooth sailing for this little man. We were all excited to see him come though the recovery so well and so quickly and move on to the nest step...rehab.

Rehab work has been going very well. Anes has been working hard since starting rehab, even if he wasn't always happy to do so in the beginning. Of course, as the days have gone by, he is tolerating and even enjoying his therapy. It has been a busy but exciting time. With 2 sessions each of OT, PT and Speech each weekday and 1 session each Saturday, he has certainly been busy. It is all paying off though, as he continues to amaze every one each day with something "new". I am excited to report that he has become quite the "jabber box" these days and that he no longer prefers to lie arround. He loves attention and wants to be held. He reacts to the environment and anticipates during little games (which I love to play with him). He giggles when tickled and he tries to play peek-a-boo. He loves watching the Baby Einstein DVDs and he smiles when I sing "Twinkle, Twinkle Little Star" to him (though I know he is totally humoring me). He eats by mouth...like a champ...and is learning to drink from straw. I am excited to see what the future continues to bring Anes. i have no doubt that there are many more skills to be learned and successes to be had.

To see him now, you'd be simply amazed. That is the power of this surgery for our kids...at least what it can be. Anes has joined his life in a way that he was not able to before his hemi. He is aware of his world and taking it all in and learning more each day. What a gift to be thankful for and to celebrate with each new day! I know Adis and Aldina are...very thankful and still celebrating each new day and skill.

Anes will leave inpatient rehab this Friday, but continue on outpatient rehab for a couple more weeks. Then, around month's end, he will be on his way home to Bosnia. So many of us - myself, the medical team, the therapists, the interpreters - will know doubt be just a little sad to see him go, but will also be celebrating his journey here and keeping in touch as it continues at "home". There is little doubt that this little life will have changed us all in some way(s), leaving a unique impression on each of us.

I wish I could give you a visual of just how well he is doing, but I still can not do so. Just know that is won't be long until you can hear all about his story and see pictures from surgery day through the present day. I can't say more than that yet, but will post the information you need when I can finally do so.

Thank you to everyone who has been a part of his journey here. For caring...for sharing...for helping. You've touched a life and made it better and there are no better gifts to share than those coming out of love and compassion for another. I continue to feel blessed to have been just a tiny part of his journey. I'm hoping we will all be able to gather together to say "goodbye" when the time comes. I will post details of any plans for a "bon voyage" party as they come to fruition.

In celebration and continued HOPE,
Holly

Anes plows through Day 3 and 4

Anes continues to do so well. The VEEG is off and he is out of the PICU. He is now on the pediatric floor and doing better each day. Day 3 was probably the "worst" for him in terms of general recovery. He was more awake and aware and started to run a temperature (which is generally normal for the hemi kiddos post-op) and you could just tell that he was feeling crummy. After some Tylenol and pain med, he was feeling a lot better and was able to sleep. Of course, because of the fever, the medical team collected blood to culture just to be sure. So far, they are clear. Oh, and no sign of the "s" word. YAY!!!

Yesterday, he was really looking great! His right eye is now fully open and he is trying to smile in response to the silliness that we all give him. He is making all these little vocalizations when he is upset and cries, which he does now. Aldina said he did not do these things before. And while it is tough to see and hear him cry, it is so good to see him have this completely 'typical' response. We take that as a good sign of the things to come !

Oh how I wish that I could share a picture so that you can see how amazing he looks. You just have to trust that he is looking great. I am so proud of him...such a tough little guy! He is drinking some from the bottle again (after not wanting to on day 3 probably because it hurt to "suck") and eating baby food from a spoon. He is taking all his meds orally, though he really doesn't want to swallow that yucky tasting Topomax. He lets you know how much he dislikes that!

Last night we brought dinner over to the hospital. Since the cafeteria food is not-so-good, they has been going to the Hardee's across the street and had had just about all the burgers they could stand. So, we decided to bring Italian (spaghetti, chicken parmesean, chicken canolloni, etc) over and all have dinner together in the room. I think it was a nice change of pace and we all enjoyed the chance to eat together and talk.

It has been awesome to see so many people step up to support them over these last few weeks. Every interpreter that has come to assist has fallen for Anes and Adis and Aldina. Now they just come over to check up and hang out with them all of their own accord. It is so great to see that. The human spirit...moved by a child. Thank you Ruzica, Milan, Marko, Tina, Josh...you all have been such great support and comfort! And now, I suspect, life-long friendships have been made!

That's it for now. I'll update later after I check in on them all. Have a great day!

Much love,
Aunt Holly (that is what I call myself now...Anes' US aunt..haha)

P.S.: My own Sweet Pea turned 4 years old on Friday! Hard to believe...where did 4 years go?

Day 2 is GREAT too!

Anes' second day of recovery was another great day! WOW is the only word I have for what I see each time I visit him. He is one tough little man! He is drinking from a bottle, taking his medicines by mouth (admittedly with a little prodding for the ones that don't taste great). He is using his right hand just as before...trying to get his pacifier to his mouth. I think the right eye being swollen nearly shut is making that task a bit difficult because he can't see so well from that side. He will get it though in the days to come, as that swelling goes down and he can fully open his eye again. He was able to open it a sliver today, which was more than yesterday.

Overall, the head swelling seemed no worse today. Really, it is A-M-A-Z-I-N-G just how great he looks. He was still hooked to the VEEG, but tolerating it well. Still no sign of any seizures....PRAISE GOD! Aldina was told that it would likely come off tomorrow sometime and he would be moved out of the PICU. His stats are all great. No nasal canula for oxygen today. No IVs. He is only hooked to the VEEG and the vitals monitoring leads and still with the central line. That's it! What a little champ. He doesn't fuss much at all while lying in the bed...only when being moved 'cause it hurts his little head. Aldina said he was trying to smile at Adis this afternoon and that he gave them more of his little "kiss smacks"...so sweet.

Thank you all for being such a fantastic prayer and emotional support team for Anes, Adis and Aldina. They are so thankful for everything! I wish you could all meet them and know them as I do now. They are wonderful people who have shown us all again just was great FAITH looks like. Even though I have been present for this...I still have to remind myself that this has really happened. A beautiful boy from Bosnia came to America to be treated by a surgeon and medical team who cared enough to make it happen because they felt it was the right thing to do. Almost a year after that first email from Asmir...it really has happened.

Please say a little extra prayer of "thanks" to our loving God today. He saw to it that this would happen for Anes.

In FAITH,
Holly

Recovery Off to a GREAT Start

I went to the hospital to see Anes late this morning. WOW! He is doing exceptionally well.

While I was there, he opened his left eye (his right is swollen shut) and moved all his extremities. He was already extubated and breathing on his own with only a nasal canula. He made several small little sounds and vocalizations. I was just blown away at the sight and sound of him. He is voiding great, but as usual, still waiting for the BM to show up. He had been given clearance to start feeding by mouth again late this afternoon. Oh, and the sweetest thing...he made his "kiss smack" back to Aldina when she made it and asked him to give her kisses. PRECIOUS and IMPRESSIVE. Less than 24 hours after surgery!

Dr. Patel stopped by and said that so far everything looks good. They had gone through the VEEG up to 10:30 pm last night and there had been no sign of a seizure getting through to the other side or body. He was very encouraged by everything that he was seeing Anes do...which gave more weight to our own encouragement. By the time I left to go to work, he was resting comfortably in Aldina's arms...for the first time since she and Adis had turned him over to the team for surgery. It was a moving sight to see him in her arms again. I know that moment...what it feels like...and what calm and relief it brings. Aldina told me could hold him like that all day. And I just bet she did.

Now, some of you may have noticed that I have not posted any pictures in the last couple of days. I did not stop taking them and I did not forget, but there is a reason that this blog is devoid of pictures right now. Anes' story caught the interest of a national media source and they have been in town covering his story. As a part of this interest and the intent to air this story on TV, the family and involved parties had to agree to a few things - one of which was not to post any pictures and not to talk to other media until the story this media source has produced airs. So, you will have to take our word for it that he is doing well and he LOOKS great.

If it all seems crazy that any of us agreed to this, let me assure you that it is all because we believe in the story that will be told...in its ability to teach other's about this condition, this surgery, the power of compassion, and the good that comes from helping another. We hope you will agree that it is all worthwhile in the end. All we can say for now is keep your ears perked for the story at a time in the not too distant future.

And, as always, keep those prayers up! They have made a great impact.

In Peace,
Holly

Off to PICU

As I noted in the earlier post, Anes' surgery is completed. He is now in the PICU resting comfortably. Adis and Aldina were able to see him and talk with Dr. Cohen and Dr. Patel. By all accounts, everything went very well. He is still hooked to EEG to monitor for any unwanted activity, but so far things are looking great!

After work, I visited with Adis and Aldina for about an hour at the RMH. They were so relieved to have this part over and very happy with how things have gone. We hugged and celebrated today and what this means for Anes and their family. I can not tell you how wonderful this child and his family are...I am so blessed to know them! I have grown to love them all so very much.

The staff at Methodist, Dr. Cohen and Dr. Patel have been nothing short of amazing. I wish more doctors could be of this caliber, could be this generous, humble, and compassionate. They have made an impression on all of us. It is not everyday that you meet these kind of people, much less physicians with their knowledge and skill level. I know that I am forever grateful to them for helping Anes...and for doing so in such a humble manner.

Tomorrow morning I will go to see Anes with my own eyes for the first time since surgery was completed. I can not wait to see him! I have no words for how I feel right now...

Please keep Anes in your prayers in the days to come, as recovery progresses and he begins rehabilitation. This part of the war is done, but there are other battles still to be fought for Anes.

In Joy,
Holly