Life on a Roller Coaster

We have felt like we have been on a constant roller coaster ride this past month! A lot happened, and we feel like we have finally gotten to a place where we can breathe for a time (and boy, we needed it!).

Recovery after surgery did not go as hoped for. Instead of getting better and better, Joel started to seem more and more uncomfortable and was not sleeping at night. Finally on Tuesday, at 3 weeks in casts, after eliminating all other possible causes of discomfort, Dr. Fearon agreed to take the casts off early. We are so grateful he did because, to our chagrin, one of Joel's hands was suffering terribly. We will never forget that moment when the cast came off, and we saw our baby boy's hand in grave condition: swollen, bloody and the skin looking terrible. it was a miserable moment and not what anyone had hoped for! Joel had full skin loss on the inside edge of his pinky finger and his little pinky bone was exposed and the skin starting to get infected. We still don't know and may never know the cause, and this is Dr. Fearon's first time to see this happen in his entire career (Dr Fearon-the world expert on Apert's Syndrome who has operated on thousands of kids with Apert's Syndrome). We don't know what will happen to this precious pinky finger since it was exposed.  At this point, any sign of an infection is gone, but he could lose part of the finger or lose motility. This, of course, was very sad news to us. I have been tempted at moments to wish we had stayed back in Honduras or want to play the blame game at moments, but I am reminded that God so clearly led us to this place and that He is the one we have put our hope and trust in. He knew what was happening under the cast, and His purpose in all of this is bigger than us and our understanding. I am again reminded that doctors are but mere, finite men who can't control how a body heals and can't always keep bad things from happening. And I am faced with the great reality that there are things in life that are much worst than losing a little finger.

Also, I can't help but believe that this is all part of God's great plan to display His glory through Joel's life. It just seems too ironic that this would be the first time for Dr. Fearon to see this in his career-especially after switching countries so that Joel could be his, the expert's, patient. It has made us pray like never before for him and his staff, that they would see God at work in this situation and come to His feet. We have been seeing him and his staff on a daily basis for dressing changes. Also, I had the opportunity to share with Dr. Fearon and his staff that we are believers and let them know that our hope is in God as far as Joel's healing and future. We don't know what will happen, but we trust God that He loves Joel more than even we do. Please pray fervently that the Lord would bring anyone who doesn't know Him in Dr. Fearon's office to a place of surrender to Him.

On a very bright side, Joel went from being a miserable mess to being his normal, happy self within minutes of the cast coming off. We are so relieved and happy to have our sweet baby back! We felt like we had found him after losing him! And it was so exciting to see him ecstatic over his other hand which was free! He spent the day laughing, twirling it around in front of his face and staring down at his free feet. What irony to be grieving the possible loss of a little pinky, yet celebrating and rejoicing over the new tiny fingers and toes that Joel now has! I truly am thankful when I am reminded that he could be spending life with no fingers at all!

So, so, so many thoughts on life. Like I said, it has been a roller coaster ride. We have had miserable moments this last month as well as moments of great joy and encouragement. At this point, we don't know how this little dip in the journey will affect or change these next months. Please be praying for us that our hearts would truly be set on the things of above where Christ is seated at the right hand of the Father. Also, we beg of you to pray that the Lord would spare Joel's sweet little finger and fingernail and for complete healing. Pray for us as we transition to wound care at home-tonight was our first night to deal with this difficult finger by ourselves.

We praise God for the many people who have been praying for Joel and for the situation. We truly feel that there is an army of prayer warriors behind us, and we are so grateful. We praise God that Marvin has been able to go to all of the hospital visits with us and be here during this critical time when we most needed him. We also praise God for Hailey, who has been a tremendous support to us in so, so, so many practical, spiritual and emotional ways. God is good and gracious!

Un Mensaje en Español para nuestros Amigos Hondureños

Queridos Amigos y Hermanos Hondureños,

Antes que todo, queremos agradecerles por sus mensajes, apoyo y oraciones. Escribo principalmente en Ingles en este blog, pero no quiero pasar por alto que hay muchos de ustedes que han estado pendientes de nosotros y merecen un informe acerca del proceso que estamos llevando con nuestro bebe, Joelito en su idioma nativo.

Como la mayoria ya saben, el 31 de Agosto, Joelito tuvo que sufrir su primera cirugia en sus dos manitos y pies. Fue una experiencia muy dura para el y para nosotros. El tuvo que pasar la noche en el hospital y el siguiente dia lo trajimos a la casa con cuatro yesos-uno en cada mano y brazo, pie y pierna. Tiene que andar un mes con los yesos. No ha sido facil el tiempo de recuperacion. Una de las luchas mas grandes que estamos susteniendo es que ya llevamos 2 semanas y media de dormir muy poco en las noches y cuidar a un bebe frustrado y cansado en el dia. Mantengannos en oracion que Dios nos de la fuerza y descanso que nosotros y el necesitamos. Estamos muy cansados y tristes al ver sufrir a nuestro bebe. Oren que Joel puede comenzar a dormir mejor en las noches y que el pueda completar su tiempo de recuperacion sin mas complicaciones. Oren que Dios traiga sanidad a su cuerpito y le levante los animos en este tiempo. Sabemos que Dios es el gran doctor y nuestra confianza esta puesta en El solamente.

En medio de todo, vemos tantas formas en las cuales Dios nos ha dado gracia y misericordia. No nos ha tocado pasar por estas pruebas solos y sabemos que todo esto es para un mejor futuro para Joelito. No entendemos todo el proposito de Dios en todo esto, pero creemos con todo nuestro ser que El es bueno y que sus caminos son mas altos que los nuestros.

Extrañamos a nuestra gente en Honduras-nuestros familiares, nuestra familia IDHC, y los muchos amigos que han formado parte de nuestras vidas. Sepan que no les hemos olvidado, y no nos olviden tampoco en esta lucha que sostenemos. Los queremos a todos.

Con todo nuestro amor,

La Familia Lopez-Faull

Tired of Casts!

We are to that point where we are just tired of the casts! Like my mom said when she was here, taking care of a baby post surgery is a lot harder than taking care of a newborn...or at least, the newborns I have had!

Here goes a description of life right now: I have pretty much checked out of the kitchen this month. We would be scrounging for food if my mom, and now that she is gone, Hailey, weren't here to help us! I very much miss our great sleeper and comfortable nap and night routine Joel had before surgery. At this point, lack of sleep is one of the hardest parts of life. Joel is waking up all hours of the night, and his naps have been on the short side. It is like being back on square 1-back to the place I was at when he was 2 months old and getting to that point that babies reach when they no longer sleep long stretches during the day, have no routine at all, and don't let you get anything done! Those of you who have dealt with sleep troubles know exactly what I am talking about. Add to that 4 casts, pain, itchiness, stomach problems, caring for a 2 year old at the same time and whatever else and you will have an idea of what we have been facing this past month! Life is at a standstill right now. Trying to figure out what Joel's specific needs are and how to help him has been challenging and exhausting. We have tried so many things and keep hoping that he will turn a corner and adjust to life in casts soon. We keep hoping every night that this will be the night that he will finally get the rest he so badly needs.

Please pray that Joel will, indeed, turn that corner soon. If we don't, we may have to take Joel's casts off a week sooner than planned and have to dress his wounds 3 times a day for much longer than we would otherwise have to.

In the midst of our exhaustion, we have been encouraged by the posts, notes, gifts and messages that so many of you have sent. We are thankful for the many prayers being said on our behalf, the support and love we have felt and the help we have received. We are so grateful that we are not alone in this trial and that so many burdens have been taken off of our shoulders by loving family and friends. God is merciful and we know He will get us through this trial.

Lots of snuggles!

Feeling tired!

Hanging in there

A week and a day after surgery, and we are EXHAUSTED! Trying to keep up our spirits and not become discouraged, we are learning valuable lessons that will hopefully make our next round of surgery easier in some ways and at the same time, make us dread another round even more. Maybe it's the lack of sleep catching up to Joel or us trying to start weaning him off of Tylenol and Ibuprofen way sooner than he was ready, or maybe Joel has been feeling itchy underneath the casts, but to me he seems more tired and crabby than he did a few days ago! That never-endless guessing game that mothers of small children have to play can be exhausting, confusing and never really satisfactory at times. We can't really know what he feels, how sore or in pain he is or if he is just plain tired of the new cast norm! In the midst of all though, we are thankful to see him playing and smiling throughout the day and can't believe that we have completed a fourth of the first cast time already! I was encouraged to talk to Jen Norman on the phone yesterday and find that much of our experience is similar to what they and baby Nathan experienced their post surgery months-what a blessing to have them as a resource and spiritual encouragement during this time! 

Please pray for strength and endurance during this time, and pray for extra grace for Joel as he struggles to stay asleep at night and get the rest that he needs so badly. Pray for patience and wisdom as we look for ways to entertain, distract and comfort him. 

We praise the Lord for my mom and Hailey who are here helping us and serving us during this time. They have really spoiled us and taken so many huge burdens off our backs! We are thankful!

In the midst of this post-surgery month, Joel reached an exciting milestone! He learned his first baby sign-the sign for more. He has mastered moving his casts together to ask for more when I am feeding him. This is not too much later than the time Michayla started to use her first sign as well. I have no clue what that sign for him will look like out of casts, but am excited to see him developing and responding! 

A picture from this morning-one of Joel's favorite people making him smile! 

Recovering

Snuggles with Papa at the hospital

Last hugs before surgery

Right out of surgery

Giving some smiles two days after surgery

Trying to cheer Joel up without much success

First breakfast at home

Sitting with Papa

Day 3 after surgery 

At home resting

Snuggles with a sweet sister

Day 4

Day 5

Pictures say more than words!! Before anything, I must apologize for how bad the display of photos above looks. I was plagued with some technical difficulties as I put this blog post together and the photos seemed to have a mind of their own as far as their placement. So, what's done is done!

5 days after surgery, we are amazed at how well Joel is doing. He is more cheerful than many who haven't had surgeries and aren't wearing casts, and his smiles and laughter are so comforting to us. He is almost back to his normal diet and routine at this point after some stomach trouble for the first few days. He doesn't seem as tired and is down to three naps a day after a few days of sleeping on and off all day long (but never long enough stretches!). We have taken him shopping and out to eat, and he has done great. We are so thankful that he is doing well and excited to see him playing with toys and trying to grab things even with his casts on! These boxing gloves won't hold him back!! Hopefully he won't give anyone a black eye this month! We are tired and exhausted after a week of Joel (and ourselves) barely sleeping though. He has barely cried at all this week amazingly, but has been waking up most hours of the night struggling to get used to sleeping in casts.  I am thankful to have a strong husband to help me as Joel has gained A LOT of weight with his casts!

The whole surgery experience has been a whirlwind. We can't believe and feel relieved that the first one is over after so much anticipation and preparation! My mother's heart has grimaced and dreaded the pain, needles, blood, cutting, and casts Joel would and will face. We have so many praises and really, the experience could have been so much worst. However, I will never minimize Joel's pain. It was a painful, scary and confusing experience for Joel to wake up in casts in a hospital bed, having had his fingers and toes cut into and re-shaped and having no clue what was going on. It feels crazy to take your child to the hospital completely healthy, happy and excited and bring him back discouraged, sad, and in pain. I will never forget Joel's disappointment after surgery when he realized that his new-found skill of grabbing and holding things was (temporarily) gone. I am thankful for so many things though. I am thankful for many things that did help the pain and minimize the trauma so much. Joel had no PRE-op trauma at all-no blood work, labs, scary tests or poking. His IV was put in after being under the anesthetic effects of the gas mask. He had an rapid-sequence MRI done on his brain three days before surgery that was done without anesthesia, only took 5 minutes and which he almost seemed intrigued by. He had a caring staff to care for him and a world expert on Apert's Syndrome as a surgeon. He had classical and worship music playing in his recovery room which, I believe, greatly helped to comfort and relax him. We were able to call a nurse during surgery every 30 minutes to see how things were progressing, and I could hold Joel in my arms right away and as often as I needed to after surgery.  I am thankful that my parents, Marvin's mom, Natalie and Lizbeth, Hailey, and some of our extended family were all able to be with us that day. It was comforting to know that Michayla was very well taken care of so that both Marvin and I could spend the night at the hospital with Joel during such a hard moment in his life. I am thankful for the support we have felt throughout this week by our family and so many of you which has been so overwhelming. Words can't express our gratitude. I am even thankful for the casts. We don't have to worry about bumping or hurting Joel's fingers or toes. He is fully protected and can whack his arms and legs around as much as he wants. I am especially thankful to be back in our beautiful new little home (after only one night at the hospital) and to even have a place to come home to at all! God has been so extravagantly loving with us and provided a home, furniture, and everything we need to rest and nest in during this crucial time of not only surgery but, on top of that, transition to a new place of residence. He is abundantly good and merciful! Above all, I am thankful for our precious Lord Jesus who has felt all of the pain of this world and loves us so much more deeply than we will ever comprehend!

Some other major praises: Joel's sleep study results showed that, at this point, he has no major sleep apnea. Also, the ENT who put tubes in Joel's ears during surgery (to prevent more ear infections) reported to us that his ears looked great, and he currently has no fluid behind them at all. We are so grateful for God's grace on our sweet baby's life.

Continue to pray for us and Joel that we can recover physically from very little sleep, that Joel's fingers and toes will heal well and that God will continue to give us strength and prepare us for the next step. We anticipate the next surgery to be in about 3 months, but do not have a date yet. Pray that the timing will be right and that Joel's post-op appointments will show great progress.  Pray that God will continue to give Joel grace and contentment as he lives life will four casts on, and pray that God will protect Joel's brain, eyes, ears, and every part of his body in the years to come.

Thank you all for your love, support, notes of encouragement, gifts, and especially your prayers for us! We are forever grateful...