Casts Off!

   What a relief to get Joel's casts off on Wednesday! The longer the casts were on, the harder things got! Joel's sleep was horrible, and his demands seemed on the rise throughout the day. I also realized I still had some fear to deal with after our first cast experience. There were many moments throughout the night when Marvin and I were once again attending to Joel's needs when we asked each other if everything was truly all right (which thankfully it was). All that to say, I am so thankful that we only had to wait 2 weeks this time, and humbly remembering that God is still sovereign over Joel's hands and loves him more than I.

   We celebrated and clapped throughout the week at home when we talked about the casts coming off, and Hailey and Michayla did not want to miss out this time on the moment of reveal. Michayla was delighted and excited at the thought of her little brother having fingers! So the two of them, Joel, and I readied ourselves on Wednesday morning, and after a quick celebration/lunch stop at Marvin's work, we headed to Medical City to Dr. Fearon's office. 

   Of course, Joel hates these kind of appointments. Anyone messing with his hands and/or feet is never a happy thing for him. So, after crying and lots of "Biper" videos, we said good bye to Dr. Fearon and his sweet staff. Hailey and Michayla did great during the office visit! Hailey had to hold back tears and fear when the last gauze came off, and Michayla sat politely in her lap talking to Dr. Fearon's nurse, Cindy, while trying to remind Joel that the casts were finally going to be gone. We proceeded to the hospital play area to cheer up Joel's spirits and celebrate some more. He has been very excited to show off his new fingers. 

   We are on to dressing changes 2-3 times a day at home now. Joel, of course, very much dislikes the changes, but they are necessary to his healing. His fingers and toes are still sore and sensitive when bumped. He is not holding or picking things up yet, but he is slowly touching more and more things and enjoying very much his mobility again. Giving him real baths again has been really good-the sponge baths just weren't cutting it, and he was sweating and sweating with the casts on (which, of course, resulted in a very stinky boy)! Also, we are thankful that his sleep is slowly getting better!

   We are tired and (the kids and I), at moments, cranky after the past few weeks! I have been reminded the last few days of one of the purposes in all of this-God using these circumstances to work on my character flaws. As I have at moments complained of the exhaustion, I am humbled to see how much farther I have to go in laying down my life with Christ. His ultimate example of humble servant-hood as the King of kings and Lord and lords reminds me that he laid down his life and much more than I could ever lay down. I am humbled when I see the two precious children He has entrusted into my care for such a time as this and know that teaching them to have the right attitudes amidst the difficulties of life and positive perspectives starts with the example I give them in my own attitudes and perspective. I am thankful that His mercies are new every morning and that I can trust that He is not finished with me or them yet!

   We again are thankful for those who have continued to uphold us in prayer and continue to encourage our spirits and help us in a variety of ways. As we look at the end of this first surgical stage and towards the future, we anticipate a good break from Dr. Fearon's office! He doesn't want to see Joel until March of 2017 as long as all is well! We will continue to monitor Joel this year by having another routine sleep study and MRI of his brain done this summer, as well as see a few other specialists to keep taking care of Joel's eyes and ears, among other possible things. We anticipate the break from surgery to last for a good many years though and are so thankful for the excellent health Joel has enjoyed thus far! Praise the Lord!

   "May the glory of the LORD continue forever! The LORD takes pleasure in all he has made!" Psalm 104:31

Michayla and Joel ready to go to the hospital!

A little celebration stop for lunch at Marvin's work!

Got a little tired on the way...

Play area celebration at Hospital! Casts are off!

On to dressing changes at home!

Showing Abuela his new hands

Getting pictures of Joel's hands has been VERY hard! He is not cooperative!

1 Week Post-Surgery

   It has been a busy and exciting week post-surgery! While we were at the hospital, a very dear family came to town for the week-the O'neil family! My sister Natalie, brother-in-law Josh, and their four children (plus one on the way) drove from Georgia to help Hailey take care of us this past week and cheer up Joel, which made coming home from the hospital even more exciting for him and for us! Another big highlight of coming home from the hospital was seeing Joel's face light up in a huge grin when he saw Michayla! I am so thankful that these sweet siblings have each other and for the love they share!

   This boy has been playing, sight-seeing, walking around outside, and eating good foods this week! I am so thankful to be able to report that Joel seemed back to his normal self quicker than with any previous surgery so far! Within two days, he was eating normal meals again and back to a regular nap schedule. And within a few minutes of being home, he wanted to get down on the floor and play with his toys and cousins. Joel and I ended up accompanying everyone else on many outings they had, including a trolley ride and adventure downtown Dallas to the Dallas Museum of Arts, church on Sunday, evening park trip and fun at the Children's Aquarium of Dallas, We are amazed at the patience and joy God has blessed this little guy with!

   In the midst of the fun, there has also been frustration and exhaustion as well as we expected. We still see these fingers/toes surgeries as harder and more uncomfortable for Joel than the skull surgery, although we really dislike both! He is just now at 8 days post-surgery pretty much weaned off of all pain medications, with a dose of Motrin here or there as needed. The limitations of being in casts are not easy for Joel! We are his legs, walking him around to the many places he wants to go, and we are his hands, feeding, reaching and holding things for him. His waking hours are full of many desires and demands! He and we will be so happy when he has his legs back to scoot around by himself, and his hands back to hold and grab things by himself! He is much heavier than he was 7 plus months ago! We joke that he thinks we are his horses-a little kick of his legs and thrust of his body lets us know which direction he wants us to take him. His sleeping hours aren't quite as restful as normal either-sleeping in casts for him is still not the easiest thing. He wakes up often at night and is up for the day earlier than normal. We are thankful that the casts will only stay on two weeks this time! A week from today, he will be cast-free! Having one hand cast-free, wrapped up in Coban instead, has been a help. He can bend that one arm and has very obviously favored his left hand this past week and used it as much as he can to accomplish what he wants. His thumb (although swollen and unable to bend right now) and tips of his fingers are peaking out of the bandage allowing him to feel his hair and mouth and push buttons on toys. All things considered, he has been very good-natured and happy despite the circumstances! 

   What a whirlwind of a year! We are so relieved and excited to be on the other side of the first set of surgeries Joel needed to go through! Hopefully Joel will have a good break for years with no surgeries. We are so thankful for our families, friends, and brothers and sisters in Christ who have loved us and supported us throughout this time. It has been a year of transitions and starting over once more in many ways. We have no doubt that this is where the Lord has wanted us, using these circumstances to work on our characters and increase our faith. I hope we have learned something this year! We feel like we are in a new stage now and looking ahead to what the next step is for us as a family now that this first goal has been reached. Please keep us in your prayers as we recuperate from so much activity and seek the Lord as to where He wants us and what He wants us to be doing. 

 

On the way home from the hospital

So excited to be home and arrive to his sweet sister, cousins, aunts and uncle

Trolley ride downtown Dallas 

Cousins on the trolley

Museum of Arts Dallas, Day 4 after surgery

Playing outside with cousins, Day 5 after surgery

Lots of children, lots of fun!

Children's Aquarium in Dallas, Day 6 after surgery

Boy cousins

Nadia, Joel's oldest cousin (on my side of the family) is such a sweetheart to him!

I love my boy!

Special times with Aunt Natalie

Kisses for Abuela, 1 week after surgery

On the Road to Recovery Once More

   Here we are once more spending the night at the hospital, on the road to recovery. We thank God that Joel's surgery went well with no complications and that both Marvin and I can be here with him to hold and comfort him during this difficult time.

   For us, these fingers and toes surgeries have been harder than the cranial vault expansion surgery. The big foam pads wrapped around Joel's arms and legs make it hard to move him around and the pain seems much worst for him. He has been pretty calm most of the afternoon though, all things considered, with a few crying episodes here and there.

   The plan is to head home tomorrow morning after Dr. Fearon checks him once more. We will be very happy to be in the comfort of home, but are grateful for the team of people here at Medical City who are always so kind to us.

   Thank you for your prayers for our family! Please keep praying for us!

Before surgery

Right out of surgery

               

Surgery Tomorrow Morning

   Please remember our sweet boy tomorrow morning as he once more undergoes surgery to finish separating his fused-together toes and fingers (all but his left pinkie that is).

   We anticipate one night in the  hospital and 2 weeks with 3 casts. Dr. Fearon is going to leave one hand cast-free which he has done successfully with a few patients already. Since his other hand will be in a cast, we are confident he won't be able to mess with the free hand. After the casts come off, we will continue changing dressings for a time.

   We spent a very pain-free afternoon at the hospital today in pre-op preparation. I am so thankful for the kindness and efficiency of the staff at Medical City Children's and Dr. Fearon and his office. My spirits are high today and my heart full of peace. I am thankful to be drawing near to the end of this first surgery stage and excited for Joel to have free fingers.

   Please pray specifically for grace and peace for Joel tomorrow when he once more wakes up to a very unpleasant surprise. Pray for wisdom for Dr. Fearon as he operates and protection for Joel during and after surgery.

   Thanks again to the many who have supported us and upheld us in prayer during this time. We feel the love and are so grateful. Below are some pictures of Joel playing at the hospital facility this afternoon.

Aunt Hailey playing at the "Gusano" with her "sobrinos"

How to Treat My Child with Special Needs

   I saw a quote today that stuck out to me that read: "If you want to know how to treat a child with special needs...look to their sibling, they will show you." It makes me smile within to think of Michayla scooting around on the floor with Joel, trying to do very silly dances to make him laugh, constantly trying to touch, kiss and pinch his hands and feet (which he is not always a fan of!), loving to be the big sister and "help" give him drinks and food, sometimes complaining when he starts making a mess and pulling out all of the toys she just put away, wanting to play with the toy he is playing with, yet so very often sharing the ones she is playing with to make him smile because she loves him. Really, she just treats him like any girl would treat her little brother! He is just Joel to her! 

   That's how we should treat all children with special needs-as unique individuals! I feel blessed that the family and friends surrounding us and Joel are loving and accepting of him and so many of you have really come to love and know Joel for who he is, yet every once in a while a comment or attitude delivered by someone who doesn't know him well reminds me how easy it is to put humans in categories, instead of taking the time to really get to know who they are as people. When someone compares Joel to people who he is not, acts like they know what life is like for him and us (we have found a lot of people think it's a lot worst and out of the norm that it really is!) when they might not, thinks that I am depressed and anxious because he is my child when that couldn't be farther from the truth, and feels sorry for him or us in a way that puts our struggles in life in a very different category from their own, it really isn't helpful or encouraging to us or anyone else out there.

   A conversation with Hailey today inspired this post. We were sharing some of the misconceptions people have had about Joel, us, her living with us (poor Hailey apparently is a 24/7 baby-sitter during this hard, miserable time of our lives, hehe!),  and our life in Dallas, and although we really didn't feel offended by the specific situations since we know they weren't intentional, we were struck by how easy it is to miss out on the opportunity to get to know someone because you have already put them in a category. You think you have it figured out, but you couldn't be farther from the truth. I was reminded of a conversation I had with a couple the other day. I was trying to connect and identify with them living abroad and bringing up things I had gone through as a missionary kid when we lived abroad that I thought would be similar to their journey, but as we talked and later as I processed the conversation, I realized that maybe instead of assuming anything I didn't know for sure from the get-go, I could have learned more about their life and heart if I had just asked and listened instead of thinking I already kind of understood. 

   If I could give a pointer for how to treat Joel, I would want you to treat him as a unique individual. I would want you to get to know who he is before you put him in a category or compare him to other situations you've seen out there. Right now he has no clue, but as he gets older, he will know and he will feel. I know we all fail at this, and if an ignorant comment made with no bad intention comes our way, I will try to be gracious, yet I think it's good to be made aware of how unique and special kids like him are to their families and to the world. To us, Joel is just Joel. We don't spend most of our time thinking about his syndrome-we just live life with and utterly enjoy him! And he is probably very different and a lot smarter than many out there think. Please don't feel sorry for him or us or think we live a miserable life because of Joel! If you have read any of my blog posts, you probably already know that our home is full of more laughter, more joy, more depth than ever before!