A Family is Stronger Together

Good Evening from Cincinnati!

We are gearing up for another big surgery tomorrow morning. Wyatt will arrive at 9:30 and is scheduled for 11:00am surgery. The ENT, Pulmonologist t and Plastic Surgeon will once again all be a part each with their own integral part. This surgery seems a bit more critical as we are looking for that end result making the last 5 weeks worth the wait. We need the jaw to be reformed so Wyatt is able to close his mouth without such an overbite allowing him to eat and avoiding needing to redo an upper jaw distraction. We need to accomplish this without compromising the airway we gained through the distraction. We also are removing the adenoids and the access cartilage as a result of the larengomalicia and then scoping the airway to hopefully see a pretty wide opening avoiding the need for a trach.

I'm not sure if that seemed overwhelming to you, but to me it does. I have been telling myself all day no worries, just FAITH. I believe it but man it is hard as a mom. I have spent the last 5 weeks, pretty much 24 hours a day trying to make my boy happy, feel loved, supported, and important. I have devoted every moment of every day to him. I want and NEED this to work. Luckily it's in Gods hands but I am going to be sure to let the surgeon know he can't mess it up. I will do my part, God will do his, but he better go in there with his A game. :) LOL

So i am not sure if I wrote in my last entry that I had reached this point about a week ago where I am worn, tired, mentally exhausted, tearful... I feel like I am failing at making Wyatt feel good and helpless for him, I know my older boys NEED their mom as they cry themselves to sleep some nights wanting to know when I am coming home, and lastly my husband and our marriage. I am so blessed to have a partner in all we go through but it is hard to keep things together everywhere, all the time. To make everyone feel as important as they are and to take care of yourself at the same time. I was feeling down most of the week, just ready to be done. I found myself focusing on two thoughts.

1. Whenever I find myself feeling down, I like to turn it around and see the Blessings around me. Luckily I am able to do this clearly most of the time. This time I reflected on the families I have met and been a part of their stories over the last month. Some of these families have been here for 6 months or more. Some have lost jobs, see their husbands maybe once a month, gone through divorces as a result, grandma's have retired or quit jobs to come down and support mom's with siblings while others are in the hospital. There are kids dying, or losing their battles, their are parents challenging their Faith and feeling Hopeless. The list goes on. I know I mentioned that I sometimes didn't want to come down to dinner because I would feel burdened by everyone's stories. But I do come down because I know of at least 2 families I know I impacted them in their Faith. These two families felt alone and abandoned by OUR GOD but now have their Faith restored just by hearing Wyatt's stories. I think of my months in NICU when Wyatt is born and the day I almost lost Wyatt as I watched him code in front of my eyes, or the day another baby sharing a NICU room with Wyatt passed away and I watched as the parents learned their baby had past. I think about the news we hear every night where people show up randomly and end peoples lives just because, tearing apart families. People say how do you do it? How do you not. How blessed am I to have a husband that I can call a friend and never puts pressure on me to be someone or something I am not, to have kids that miss me so much they are crying for my return, to have a 2 year old who won't sleep or go anywhere without his mama, to have a place to stay where I can focus on him and him alone without the burden of meals, or general necessities at a rate of $25 per night. How blessed am I to know the LORD and never feel HOPELESS. To have friend and family that have not only supported us in prayers but financial needs and caring for our children, home and the list goes on. To have a school community preparing meals and a church community offering gift cards and more. To have a job that allows me the opportunity to leave and be confident I have a place to return to. For Tony to have a job that has been flexible with his schedule allowing him to be here for the surgery and off earlier to get the kids each day. When you think of all this it is hard to feel down, it sure is easy to feel BLESSED. As I pondered the thought of leaving this week, which believe me even though I am Blessed I am ready. :) I thought I will miss it. It became part of our journey. I have good, sad and bad memories here. I made friends and met people from all over. I never had to worry abut meals or things for Wyatt to do. I had the peace of mind knowing the hospital was right next door and family a 5 hour drive away. I also had visitors I had never met before offering support from our church community back in MI. What an opportunity I have had. And although I am WORN, I am BLESSED. :) Thanks be to GOD!

2. My 2nd thought I pondered is the power of FAMILY. A family is by far stronger together than apart, but a strong family can be apart and still feel together. I know seems a little silly but you hear so often how marriages are often troubled and families come apart when dealing with life long illnesses. I know it has only been a couple of years for us but I never felt that threat. Quite the contrary I have always felt like decisions are made together and agreed upon as a unit. We have not always agreed but have always heard each-other out and ultimately coming to the same conclusion. Our kids although sad we are apart are happy and understanding. They know what is happening because we tell them every step, making them a part of what is happening. They ask to pray, they want to talk with Wyatt, they are concerned about him and want to spend time with him. They don't like our separation but they get it. They never made me feel guilty, always understood. That is true strength. One of the most difficult things for us during hospital stays has always been juggling the kids. Who takes them to school, picks them up, stays with them, feeds them.....Often time juggling multiple helpers and they are champs through it all.
Along the same lines, my mom keeps reminding me how crazy our everyday lives are. Tony and I working full time, kids in activities, church functions, bible studies, cooking, cleaning, kids fighting... never having enough hours in the day. She keeps telling me to enjoy this time. I laugh because I miss the craziness of our lives. I will remember this because I am writing it and will read it again and again. But I would much rather have the hustle and bustle of the crazy house, getting kids everywhere, dealing with fighting... and be together than being separated. THAT is STRENGTH. I am BLESSED :) Thanks be to GOD!

Everyone has a story, nobody's life is worse than another s. Your life is what you make of it. Be grateful for what you have, trust in the LORD and you will have all you need to get through. Next time you think someone's got it easy, remember everyone has a story.

Thank you for all the prayers for my niece. The infection did not spread to her bones and she was able to go home on Friday and is given IV antibiotics through a PIC line 3x a day for a couple more weeks. That was a scary week for everyone involved and I know they appreciated the thoughts and prayers, Please continue to pray that the infection improves and she is able to regain all of her mobility.

Please pray for Wyatt and the Doctors tomorrow, so miracles can happen. Please pray for my sanity as I wait. I am not a good waiter. :) And a quick healing, relief for Wyatt having the contraption gone, for the older boys as they get through these final days without mom and dad.

Thanks for your support. Feel free to share Wyatt's story with anyone and everyone. It has been fun to hear from people I have never met but follow his journey. I love the thought that maybe one thing I write impacts someones life in some way.

Lastly, I apologize No pictures today as Wyatt broke my laptop this week :( and I have to use the computer at Ronald Mcdonald House which will not allow me to save them . I choose an oldie but goodie in honor of him getting the contraption removed tomorrow.

Love from Cincinnati

Tony, Melissa and Wyatt

WORN but FAITHFUL :)

                              Wyatt petting a snake from Newport Aquarium that visited RMH

This is Wyatt running from me and thinking it is hilarious.

My boys together: Joey and Noah are so good with him. 

Jeremiah felt that way when he cried out in Lamentations 3:49-51 – The tears stream from my eyes, an artesian well of tears, until You, God, look down from on high. You look and see my tears. You listened when I called out, ‘Don’t shut your ears! Get me out of here! Save me! You came close when I called out. You said, ‘It’s going to be all right.’ “You took my side, Master – You brought me back to life!

I am officially WORN. I find myself tearful about everything, my heart is heavy, my bones are weak, I am anxious and tired. I am homesick and feeling alone.

This reminds me to remain diligent in my FAITH and rely in the one thing that has got me through the last few years PRAYER. Such a powerful and simple tool that so often gets overlooked. I pray about everything regularly, but have I reached out and prayed for myself and my strength?  Nope and here I am WORN. How easy it is to forget that finding the time, not finding but forcing the time to be with the LORD is the time we NEED to find the comfort we so DESIRE. If we truly commit to praying and listening to him, we will find him. He is there. He has always proven himself to me. As if he had not already by dying on the cross for us, to bare our sins, our struggles.  He never feels overwhelmed, he can shoulder the bourdens of the world,  he died for us so we could turn to him in our time of need. 

Jeremiah prayed until streams of tears came from his eyes. He did not stop or even rest, he would not stop until the Lord looked down upon him. Jeremiah decreed, “I will cry unto God until he sees from heaven”. Jeremiah was praying not only for himself, but for his family and friends and the people in his city. Jeremiah declared before God” What my eye sees upsets my heart, and I am upset because of what happened to all the people in my city”. If we love God’s people as we should, their troubles will make us really sad, and we will petition before God on their behalf.

This especially struck me this weekend. I am surrounded by such hurt and am some cases hoplessness. This is a house full of parents and relatives of children that are sick, hurting and in some cases dying. Everyone's stories weighing heavy on my heart almost to the point that I would rather stay in my room then venture out and meet a new family or hear more stories. I spent sometime with a grandmother who knows the Lord by has lost all hope. I was able to speak to her in length about how powerful he is and how he has worked in our lives. I would like to think it helped. How said it would be to NOT have FAITH. How do those parents/relatives live day by day. If I am drained but full of Gods GRACE and HOPE, how they must feel not having that.

Turning to the BIBLE tonight for the guidance and the STRENGTH I need to keep going and GRATEFUL that my FAITH has never wavered. 

Wyatt is much happier. He laughs and plays and is running around this place like he owns it. He is sleeping well (no naps) and still watching DORA every chance he gets. 

We had another trip to the Emergency room on Saturday as one of his wires broke connecting the device to the pin in his jaw. Unfortunately the Plastic guy on call didn't really know what to do and I found out today when I went for a check up he did not tighten the tension enough. I am told not to worry that it "shouldn't" effect anything but of course I am feeling a bit frustrated. I was able to get back and tighten it a bit myself which he did not like but they were happy the bone to solidify enough yet preventing me from turning. 

I was reminded this last week why it was important to be here at the Ronald McDonald House. Between the NG tube, the wires, the pin sites and watching how Wyatt is with Joey and Noah. He is a risk taker when they are around which he can not be with this devise. It is funny because I have been trying to make excuses as to why going home would be better and every time I start to think about that something happens. I guess I should stop thinking that and maybe things will stop happening. It is another example of how God answers us in ways we least expect we just have to listen. 

Wyatt is funny he keeps trying to take the devise off as if he could. He will pull at the top and at the pin sites, which hurts him but he is diligent about wanting it off. He will say "Take this off". I feel bad but applaud his efforts and understand the want for it to be removed. Since he has been feeling better he has been wanting to eat and drink which is difficult for me to tell him no and difficult for him to understand why? He hates being hooked up to the feeding tube he keeps trying to figure out how to unhook it and he will sign "please" which breaks my heart. 

My original plan of potty training him and teaching him a lot of signs has gone out the window and makes me laugh thinking about our time here thus far. Let's just say priorities are different, and I will say he know more signs then I thought he did and now that he can't talk he is relying on them. 

So I am on my own this week, but I see the end. :) Next Monday his surgery is at 11am, we have to be there at 9:30am. There is a lot riding on this surgery. The Doctor needs to be able to remold the jaw with the bone they gained making it proportionate and allowing Wyatt the ability to close his mouth and swallow so he can eat again, without loosing the airway we gained from the distraction and without needing to go back and do an upper jaw distraction just like the lower. Also the ENT will go in and remove the adenoids, scope the airway and see if any of the excess cartridge needs to be removed. Then we pray for fast and safe healing and home we go by mid to late week next week.

Today I have a lot of important prayer requests;

Please pray for my niece Natalie who is 2 (a week younger then Wyat) and has had to have 2 surgeries to scrape out an infection that she has in her hip. Please pray that it heals, has not spread to her bones, she can begin to bare weight, and for the entire family to be reunited as we certainly understand the burden of being apart. 

Please pray for Tony and I that we can find our relief to our burden through prayer and remember" We can accomplish all things through Christ who strengthens us. "

Please pray for Joey and Noah who are feeling just as WORN as we are and cried themselves to sleep lastnight missing their mom and baby brother. Please pray for their strength and the power to feel our love from a distance. 

That Wyatt may understand or be less frustrated at his inability to eat, drink or talk. 

That the surgeons working on Wyatt Monday have the POWER of GOD ALMIGHTY behind them as they perform the work we intended all along.

For all the families who are apart due to illnesses, that they may gather the strength needed to carry on and be the best they can for their family. That they can rely on our LORD for strength and feel the HOPE that only he can bring. I can tell you families are stronger together and I see why the vow to be together forever is important and true. 

In closing I am copying from Darrell Creswell as he  writes so eloquently what Jesus has done for us. 

Jesus carried the sins of the world on His shoulder, and laid down his life for us that He may bear our sorrows, carry our burdens and renew our strength. He is never overwhelmed or inadequate to supply our needs.

Let your heart shout with joy in our wondrous God. It is only God who can make all our failures regenerative. He will raise you up – just as He himself rose from the grave. It is He who is God of risings again, and it is He who wants to give you a fresh start. We stand assured in Christ Jesus, serving a God of genesis and re-genesis. He takes all your life’s pain and sorrow, and bears them in His blood, leaving them dead and decomposing.  God will refresh your world with spiritual dew, and He will hydrate your broken, shattered heart with his renewing spirit. He will lift you up, restore you and bring you back to life.

John 10:10 Jesus said -I have come that you might have life. My purpose is to give you a rich, happy and satisfying life.

Love From Cincinnati,

Melissa and Wyatt

Unconditional Love

                                               Thanks Aunt Sharon, Love this paint book

                                                           Loved this in the playground

                                                               He loves to swing! :)

                                                             Look how far that jaw is :(

                                                           Ready for bed, just missing my mama

 

Should have removed the price tag- but love this

Love this to, again sorry about price tag

Maybe I left it so Tony realizes how cheap they were. LOL

Good Evening from Cincinnati!

Wyatt is truly inspirational, there is so much I have learned and can write about him. We were blessed to have the family together this last weekend and Wyatt really perked up. I sort of felt like he was relieved he still had family outside of me. LOL

The boys were so loving and gentle toward him, they felt so bad for him. I was going to spend Saturday with the older boys at the museum thinking they needed some mom time and Noah said to me "Wyatt needs me, he is sick so where he goes I go. If he stays I stay." We are raising these boys right.

Joey insisted on sleeping with Wyatt and let me tell you Wyatt does not let anyone sleep with him other then his mama. But he allowed Joey to, and Joe really took care of him. It worked until about 3am and then we had to make a switch but it was nice to have 5 hours of sleep with my husband for the first time in 3 weeks.

Our sleep schedule is all off. My mission this week was to get back on schedule and let's just say Mission Failed. Wyatt does not fall asleep until nearly 11pm and then from 11-4pm he is restless, moaning, uncomfortable needing to be held.... At about 4or 5am he sleeps pretty good with just a few interruptions till 10am. He will NOT take a nap. I don't understand this because he is tired. I do know he can't get comfortable. He generally sleeps on his tummy and he can't. he can't sleep on his side and he gets tired of laying flat. On top of all that he has his feeding tubes all around him getting caught in his hands as he sleeps....

He is walking and running really well. He is even back to throwing fits when he doesn't get his way. He does not want to do much of anything other than watch DORA. I think in some ways this is good because he can't get hurt watching Dora but I also worry about him not getting out and being social and playing. I try to make him get out 2x a day to the playrooms but most of the time it is a struggle.

We were able to get out yesterday as the weather was sunny and 55 and they have a nice little playground. He enjoyed it but I didn't last long as everything was making me pretty nervous. The last thing we need is an injury.

Today we got back from a shuttle trip to Meijer which was nice to get out and within 10 minutes of our return Wyatt pulled out his NG feeding tube. Because of his airway this led us to the hospital where I knew we needed to go to radiology to have it placed, but plastics had to talk to ent, ent to pulmonology and then back to the ER. This took 3 hours of waiting in the ER where I did not want to be in fear of sickness. So I put Wyatt and I to work disinfecting the whole room, stroller and purelling our hands which he really enjoyed. Once we got to the right place it only took about 20 minutes, of which Wyatt was very upset.

It's funny as I was sitting with Wyatt in the ER, he wanted me to hold him close and we rocked and I sang. The whole time I was thinking about all this child is going through and now he is going to have to have this tube placed and he can't eat or drink and talking is difficult and everyday we are cleaning, turning, feeding, suctioning, medicating.... He hates every moment but no matter what fight he makes, at the end he just wants his mama. He grab holds of me and won't let me go. I am the one taking him to the hospital, Doctor, being his daily nurse, forcing him out to play, handing him off to surgeons, holding him down during x-rays and NG placements and all he wants is to love on his mommy. I have spent the last few weeks feeling horrible and helpless and trying to explain to him what's going on and why. He doesn't understand any of it but he understands unconditional LOVE more than anyone I know. He doesn't need explanations, excuses, reassurances nothing. He just looks at me and signs "I Love you" and reaches out to hold ME. Almost as if he feels bad for me. Is that not amazing. We could all learn from out children. I sure did today and many days. That was my lesson of the day.

God continues to Bless us in so many ways. Friends at home helping with after school pick ups, meals, dog watching. Friends in or around Cincinnati visiting, sending letters, gifts..., having help during the hardest weeks between my mom and husband.

I also had the privilege to speak to another mom who has a daughter who has gone through similar surgeries here in Cincinnati by the same Doctor. I spoke with her Sunday afternoon and one of the things she mentioned was that the Doctor had talked her into to doing the upper jaw right after the lower and she regretted it a bit. She wished she would have waited to see how the bottom jaw had settled. Sure enough on Monday I was posed with the same scenario, the Doctor had asked if we wanted him to use the same device and do the upper as he finished the lower. How DIVINE was it that I just had this conversation. Allowing me the confidence in saying no, let's wait. I am very concerned as of recent that we pulled the lower jaw out to far. He can no longer close his mouth, his upper teeth are so far back that I can't reach them. The further we pull the harder for the upper and lower to reconnect and for him to eat and drink without adjusting the upper. After laying in bed, praying and looking at Wyatt I have decided to stop turning the pins a few days early. I feel confidant in this decision and almost lead. I don't often go against the Doctor but for two days I am.

My last though that I have been struggling with is "pity". Wyatt looks like he is in pain and his face looks awful with his jaw pulled so forward and he is drooling like crazy. So we get these "awe" looks, or turn away, and even kids who will leave the playroom when Wyatt arrives. I am struggling with this as a mom. Wyatt doesn't even realize it's happening but I want to shout out he is just a 2 year old wanting to play. Then I started thinking about how often I may turn away without realizing it toward others for different reasons.

I hope you enjoy my pictures. I also added 2 pictures I bought today at Meijer on clearance that I can't wait to hang in the house. :)

Love from Cincinnati.

Melissa, Grandma and Wyatt

No Pain No Gain

Good Evening!

Wyatt has been sent some goodies from friends and family. :)

This is Wyatt laughing at the Doctor after "hurting' daddy. Probably gives him some satisfaction. LOL

This picture I can see the difference in that I can actually see an open airway, generally it appears to stop right past his teeth.

Hard to see much of anything here.

This is the one and only time since surgery he slept on his own. He gave me 30 minutes. :) I am going to keep showing him this picture in hopes he will realize he can sleep on his own. LOL

Before I begin I have had a few people telling me they don't get updates emailed to them, or they can't comment.

On the right side you can subscribe by email or by something else (look at the left) Then you will automatically updates when I post.

Also you should be able to comment if you click on the no comments or the number of comments button.

Let me know if you are still having trouble. I am not an experience blogger, just a mom wanting to share a story of an amazing WARRIOR.

My thoughts are all over tonight. I am not sure where to start.

Praising God tonight for so many things.

My husband left this afternoon and it made me sad. I know he is only going to be gone for 28 hrs but he is my rock, he is my best friend, my parent partner, the love of my life and even though we don't always agree we are meant to be. When I think about being sad it makes me think how GREAT it has been to have him here when I needed him most. How fortunate it is that his schedule and care for the boys arranged itself for him to be here during the most difficult transition time. He called himself "Cinderfella" as he was doing laundry and picking up"and I was "Mama Nurse". Makes me smile as I write. If I could just get some Cinderfella at home. :)

Wyatt's airway has opened quite a bit based on today's x ray's (more on that later)

My boys are coming tomorrow to visit. I have never gone this long without them.

My mom is coming to stay with me for one week.

Wyatt has the best Dr. around and he is right across the street.

I have a place to stay with Wyatt that allows him to recover, provides all our daily needs and is right across the street from the hospital.

There are people from all over praying for our family, even people we have never met.

People visiting us here that know people from our local church offering support.

The list goes on, but the best place to start is by Giving Thanks to OUR LORD!

I wish I could report that Wyatt has perked up and back to his old happy self. The truth is that he is pretty miserable. The laughs and smiles are few and far between.(We try to capture these moments and share them with you on facebook or here.) We get a lot of moaning, crying and fighting, He demands to be touched, held, and looked at all the time, day and night. I am not complaining, I can't blame him, but it is exhausting. I make sure he gets every bit of attention he so desires making it difficult to do much of anything including sleep. As a mom I just want to make everything all better or help him to understand. I lay next to him everyday trying to explain in basic terms what is happening and why, I am pretty sure he is now rolling his eyes at me. If he could speak, I think it would be "Whatever mom". He does not understand one bit and he looks up at me basically saying "why did you do this to me" it's pretty pitiful. It reminds me of a story Tony's mom told me about putting Vernors in his bottle when he was little and his tummy was upset and then the bottle exploded and little baby Tony actually said "Why did you do that?" Too funny.

 He is able to walk pretty well now, but he can barely speak or swallow. We go through tons of bibs and suction him quite a bit. As I am writing this I am reminded why he is so miserable. The Doctor asked me today if it was what I expected, without hesitation my answer was an adamant "NO". He had told me kids bounce back quickly, and in Wyatt's surgical history he does bounce back so that is what I expected. I have now come to the realization that until this "halo" is off his head he is not going to be happy. The Doctor seems to think it's his age, he is old enough to know things aren't right, but not to understand why.

So when will this halo come off? That was the simple question of the day, however, in typical Wyatt fashion nothing is "Simple". The good news is that his airway via x-ray today showed a grand improvement and initially he had indicated we could stop turning. But after some out loud processing by the Dr, it was determined because of the complexity of his left side we should probably continue to turn the left side at the same rate and cut back to half on the right side. This will allow for him to have extra bone to mold and hopefully be able to provide a more symmetrical end result. If not we could have his left side slanted upward as there won't be enough to shape. I say this as this was a simple decision. There was a lot of back in forth about coming to this conclusion that I won't bore you with but we had the option to have another CT scan or for him to be put under again to take a look and see exactly how much bone they got to determine how to proceed, or we could have stopped and hoped for the best. I know Wyatt will need future CT scans but this didn't seem worthy of the radiation and putting a child with a compromised airway under just so we could stop turning seemed silly so we decided to turn the left side for the next week. Then we will sit for a week or week and a half and then removal the week of January 27th. During that procedure he will remove the device and mold his jaw to back to close to normal and the ENT will remove the adenoids again and determine if he needs to do a superglatplasty again. He will need to stay for 2-4 days then we can go home. We will need to go home on the feeding tube which I didn't even think about and am sort of bummed about. But the Doctor seemed to think he will bounce back quickly and be able to adapt to eating within a week or two. They just want to keep the NG tube to be sure he gets his nutritional needs.
Tony and I admittedly left a little more confused then we had hoped as many things were discussed that we weren't expecting like possible surgery on the upper jaw or ramus...
I was feeling sort of down but the more I think about it we were planning on being here till the end of January anyway and one of the reasons I like Dr. Gordon is his honesty. He told us we were looking at 5-6 jaw surgery's. I have known for a long time, I just can't think about the future now. I need to get through these next three weeks. Wyatt is not sleeping so we discussed trying Benadryl at night and if it doesn't work possible getting the pain team involved and looking at valume or something. The Oxi seemed to really upset his stomach.
So I will meet with Doc Gordon again on Monday and he will have to reset the pins so we can keep turning, we are running out of room. That will not be fun for him. :( I will hopefully be able to convince him of setting a surgery date which will make me feel better having an end game. :)
In the meantime, we keep swimming. Best advice a friend gave me when I told her I couldn't keep my head above water. "Just keep Swimming" It actually came from Dory on Finding Nemo.
Another Friend who has a child with special needs told me recently they have a motto "NO PAIN, NO GAIN".

I thought that was a great title for this post. If Wyatt would not have gone through this we would not have gained the airway we did and we would very possible be looking at needing a trach and feeding tube regularly for years. In fact the Doctor said today "It's better than a hole in the neck" That is something that stuck with Tony and I throughout the day. So let's make the next three weeks happen, and look forward to all we will GAIN in the End.

God tonight I ask that you continue to guide me and stay focused on my mission as a mother. Help me to not get caught up in the future and take things as they come. Please look after Wyatt and help us to determine if he is in pain or just uncomfortable, help him and I both to get a good night sleep. Thank you for getting Tony home safely with the boys and please look after them as they travel tomorrow with my mom to see Wyatt and I. Please help me to "keep swimming" . Thank you for providing for all our needs while we are here and putting people in places to assist where assistance is needed. You are an Awesome GOD. Amen

Love From Cincinnati,

Melissa and Wyatt on our own :)

When THANK YOU is NOT enough

 

Good Evening Prayer Warriors,

 

Slurpee success- check out how far the lower jaw is over the upper.

The extended pin site- indented.

Playing :)

More playing and REAL clothes.

This is Wyatt's new Smile-:) and the cutest CURLY hair ever!

 

 

I will end this entry discussing Wyatt but first I have spent sometime over the last few days humbled on my knees with tears of gratitude. We received so many generous donations toward Wyatt's medical and travel expenses, prayers, messages and texts, and most recently we were offered the opportunity for Tony to stay and our Aunt from Florida would fly in to help with the boys, then we were sent nice cards to the house, then someone bought us a new dryer as ours broke down on Christmas day, then a leak under our sink and a broken dishwasher fixed, then as we sat down to dinner tonight we were greeted by a pastor at a local church who knows a family at out current church and he wanted to offer his prayers and support. All of these thing unprompted but gifts that were needed and appreciated beyond words. All signs of God's Glory. Angels sent directly to us by God.  What do you say or do when THANK YOU is not enough. I spent some time this evening researching this and I came across this quote from John F Kennedy.

 

 

 

 

Please know we do. Everything we do is to give Thanks. We live our life for God alone. We believe the best gift is in giving not an receiving. We wake up each morning saying THANKS and we go to bed every night giving THANKS. We know that all we have has been provided is by God and all we have is his and his alone. We know we are acting on his behalf and in everything we do , we do for him. This is always in the forefront of our minds. This is how we form our relationships, this is how we parent, this is how we love, this is how we grow our marriage, this is how we live our lives. Gratitude is important to acknowledge, express and teach. We hope those that encounter us, know us, are related to us, or just read about us know we are not just Christ believers we are Christ followers.



 

Thessalonians 5:18 says: Give thanks in all circumstances, for this is God's will for you in Christ Jesus.

 

Even in the darkest hours I know it is God's will. I may not understand it but I know it. I know I will learn and grow from whatever we experience and to be honest I like who I have become because of him and him alone.

 

So for all those who have helped us in one way or another we are GRATEFUL, APPRECIATIVE and HUMBLED. It has always been difficult for me to receive as I like to be giving but I have humbled myself over the last few years to realize it is okay to need help, and you grow as a person to be able to gratefully receive. THANK YOU!!!

 

Now for Wyatt:

 

Wyatt has had his best day yet. He is walking really well and actually trying to run (kinda scary). He is able to pull himself up from laying down with assistance and can walk up and down the stairs with assistance. We were able to play 2x today for about an hour in the playrooms and we had a 45 minute bath which he thoroughly enjoyed. He laughed and smiled more today than he has total in the last week so I would say this is like 10 steps forward. The mornings and evenings are the toughest. It takes us about an hour each morning and evening to do all that needs to be done, turning the pin, cleaning the pins, cleaning his mouth, medicine, feeding tube, antibiotic cream, suctioning.... He hates every moment of those 2 hours and it takes both Tony and I to hold him down and take care of things.

 

On Friday evening as I was cleaning one of his pin sites, I noticed the swab went from the outside to the inside and was bleeding quite a bit and the pin site had indented his chin and become much larger. We had feared he had an infection. After a visit to the Doctor we were informed that this is normal and will most likely get worse as we keep turning. I know this was god news, but it made me so sad. Those pin sites where the distractor is pulling the jaw forward are so painful for him to begin with and now to see it pulling apart his skin just melted my heart.

 

Wyatt wants to do things on his own, he wants to eat and drink but 9x out of 10 he can't and he needs our help and he does NOT want it. I feel so bad, Tony and I always let him try but we watch and feel so bad when we see his frustration.. Yesterday he had a slurpee by spoon at Target and fed himself and enjoyed every minute. We loved watching him have success, so much so that we are going again tomorrow to allow him that victory again. You can see by the picture how far we have already extended the lower jaw. It is truly amazing and explains why he can't eat or drink and has trouble swallowing and speaking. He is becoming harder to understand everyday. I bought these Yes and NO buttons to help him tells us what he wants. They say Yes and No 10 different ways. They are funny and LOUD. He loves them, we are getting a little sick of them. He doesn't use them to communicate he uses them for play. We are trying to teach him their purpose but he just laughs. We are trying to give him choices visually, do you want to wear this or that or watch this Dora or that (LOL). This is giving him some of the independence he so desires. Plus he still has his basic signs so that helps as well.

 

I will end this with one of my favorite Psalm's:

Psalm 28:7

The LORD is my strength and my shield; my heart trusts in him, and I am helped. My heart leaps for joy and I will give thanks to him in song.

 

God-

Today and ever day I give thanks to you and all you provide. You have unveiled yourself in so many ways over the last few weeks, making your presence known all around us. This could not have come at a better time. It is wonderful to know when we need you most you are there. I marvel in your existence everyday and on my knees in praise. Thank you for giving us a day of victory. Please continue to make yourself known in our lives. Let us serve for you alone. Please look after Wyatt and help everyday to improve. Help me to not look to far ahead and take things day by day or minute by minute. Please be with the boys and surround them with your love and the love of Tony, Wyatt and I. Please look after everyone at home in MI that will be driving in the Winter storm, and help Tony and I to continue to grow as parents and husband wife. In you name. Amen

 

Love from Cincinnati,

 

Tony, Melissa, and Wyatt Geers

 

 

 

A Smile a day!

My guys sleeping in the hospital

Play time this morning

Our door to room 24 at Ronald McDonald. It tells Wyatt's story and pictures of him and brothers.

Wyatt Watching Dora

Wyatt wanting Nothing to do with Picture taking so he refused to open his eyes. Love HIM~




It's hard to believe we started this journey only a week ago, it feels like it has been an eternity. Wyatt  is an amazing little boy who melts my heart day after day. I know many o you follow us on Facebook, but a few do not have Facebook accounts.

A summary of where we are today:

We were discharged yesterday to Ronald McDonald house, honestly it was only by the grace of God they let us go because yesterday was one of his worse days. He pulled out his NG tube and his IV and since his airway is so narrow we had to go to radiology to have a new tube placed. The radiologist tried twice and said it wasn't working and he wasn't going to push it because  he thought Wyatt should be put under for placement. I quickly lifted my head up and said this is our only option, he needs this, I need this, try again. However I looked or whatever precise words came out almost put a look of fear on the poor radiologist face- BUT- he tried one more time and I held my baby tight and sang his favorite song "Hush Little Baby" and SUCCESS!
After going back in forth all day with the Doctors we agreed we would go for discharge in hopes a change of scenery would perk him up. As we were getting ready for discharge I realized something that never crossed my mind. Wyatt can NOT walk with this contraption on and lifting his head was difficult in itself. I was so worried about his inability to eat, drink and speak that I didn't even think of the balance with this added weight on a 2 year olds head. All day yesterday my stomach was in knots. It's hard to know what the right thing is. All I knew is that he was miserable. We had home care meets us at the house to go over tube feedings and although Wyatt was tube fed for 8 months as an infant some things have changed and it seems a whole lot more complicated, on top of this Wyatt is on some medications and needs his pins turned everyday and cleaned which is pure torture or so he acts. I was nervous whether I could remember everything I needed to do, and whether going home was best and how I was going to do all this by myself when Tony leaves... the list goes on. During that visit it was determined Wyatt should have a suction machine because he has trouble swallowing his salvia and it builds up causing risk for aspiration. So today we had a respiratory therapist come out with the suction machine.
Last night was rough, it did not appear the change of scenery was helping at all. He was miserable and wanted to do nothing and if you even looked at him he would shut his eyes and turn away as he was disgusted. Then when it came time for feedings, medicine, pin care....it was as if his world was coming to an end it took the both of us to hold him down. It was a little after midnight when Tony and Wyatt finally passed out and I was at that sweet spot where sleep was within moments and the fire alarm went off. Soooo- we all had to get up take our feeding pole, stroller.... down the steps and outside where we waited for about 20 minutes for the firemen to clear us for reentry. Then we had to get Wyatt relaxed and asleep all over again. Which worked until about 3am and then he moaned and tossed an turned and wouldn't let me let go of him or turn the opposite direction... I was pretty frustrated but trying to keep in mind all this young man has endured.
Today was better, we had a bath and went to play in the playroom with him fighting every step of the way. BUT once we got there he actually played for about 10 minutes and then he was done. We came upstairs took a nap. then went to the store-- which Detroit gets a bad reputation but let me tell you I would feel more comfortable downtown Detroit then I do in this area of Cincinnati. When we got back we decided to try this play thing again and the most wonderful thing happened. Wyatt LAUGHED and SMILED. Glory to God, I needed this, Tony needed this and I KNOW Wyatt needed it. He played for 30 minutes before he was tired and ready to come up and start the nighttime torture. He is now lying calmly with his daddy watching Dora. I have seen every episode of Dora ever made about 5-10x in the last 6 days. This child is obsessed and if I hear the "we did it" song one more time I may vomit. In fact when I was eating fruit this afternoon I actually said "muy deliciouso": its sad really. However, this is the one show that calms him, that and my singing ( I know scary, since I can't sing). All day I have dreaded that Tony is leaving tomorrow and thinking there is no way I am old enough to be responsible for this human being.  Although everyone keeps reminding me I am 35 and am responsible. (When did I become 35 and a mom of 3????) Time sure does fly. We did get news this evening that the boys are covered with my mom tomorrow night and can go to camp on Friday so I can have Tony one more day. This makes us both very happy and me worry less since there is a lot of snow in parts of Ohio and MI. I would have worried about his driving.
The older boys have had a blast this week, spoiled for sure but they deserve it and it made it easier with us being away. They will come with Daddy a week from Friday after school so that means I have to make it 1 week on my own. It didn't, seem bad till I realized we have only been hear a week and it feels like forever. LOL But everyone says I can do it so I must be able to. :) However if anyone wants to visit I have an extra bed, free meals and the weather was 45 and sunny today. :)

I want to end this by saying how grateful I am for so much. Wyatt has taught me so much, my Faith has grown deep, my love for all my children and husband is overabundant. I have felt the love and support from family, friends, church community that we didn't even know existed. I have met so many children and families over the last 2.5 years going through similar and in many cases far more difficult scenarios and the one common thread is you have to know God to get through it. You can't do it on your own. I can pinpoint write away if a family truly has FAITH and it is so sad to see so many don't. I always share my FAITH wanting to give people something to be HOPEFULL for. When people ask us how we do it or say how amazing we are, Thank you but it's not us. It's our FAITH it is GOD 100% we just act on his behalf. It is clear he guides us every step of the way. Sometimes it's hard for me to let go but when I do it is such a peaceful feeling. My cousin recently shared Wyatt's Blog on her Facebook page with a status that said. Read about this amazing boy, if you didn't believe in miracles before you will now. This made my heart happy, if Wyatt's story helps people believe in miracles that is worth the world to me. Let me tell you, if you read and saw what I have read and seen about Wyatt you would 100% believe he is MIRACLE. Wyatt Matthew means BRAVE WARRIOR. There is no doubt this boy deserves this name and no coincidence that this is the name we decided upon after a small sign on an HGTV show. There is a plan for everything and I have seen this demonstrated through so many scenarios in the last 2 years. I am so thankful to have GOD in my life and BLESSED beyond words to live the life I live. There are days that are hard but you just keep pushing through. A was recently recommended a book by a coworker who lost a child called Loving God, When Life Hurts. She said this is what got her and her husband through it.  The title alone made me want this book. Thank you Aunt Mary Jo for ordering and sending to me and Tanya for the recommendation. I can't wait to read it. But just think about that title. LOVING GOD EVEN WHEN LIFE HURTS. Powerful and So important.

Thank you again for all the prayers, support and kind words. I love reading your comments and texts.
Feel free to share Wyatt's page with anyone and if you are on Facebook you can catch quick updates at Wyatt "Warrior" Geers

God Thank you for the ability to see glimpses of my boy today most importantly smiles and laughter. Thank you for giving me another day with my husband. Please continue to look after all of us and look after Tony as he travels home on Friday. Help Wyatt to gain more confidence in his ability to walk and play and be pain free. Help me to gain the confidence I need to get through the next week on my own with you by my side. In your name. AMEN