All in God's timing!

We are back home (we made it back late last night). Yesterday was disappointing...Carson did great but the news wasn't exactly what we were hoping for. They just did a scope yesterday (no balloon dilation), they saw an area of scar tissue just above his trach that Dr. Cotton said will require another BIG surgery (in 4-6 months). The surgery will involve moving his trach site down, possibly another rib graft, and another stent will be placed for 10-14 days. This will mean staying in the hospital for 5-7 days afterwards and probably 4-5 surgeries including the big one in the matter of several weeks. It brings tears to my eyes just thinking of Carson having to go through all this again. It is so hard to think of your child being cut on and put through pain and discomfort! My heart breaks yet I know Carson will make it through it (as will we) and I'm sure his perfect smile will be there along the way. It's so easy to let this get us down...it is sometimes a decision to find the blessings/the good but they are always there...

Here was my view on the way home, just outside of Cincinnati. God's LIGHT shines through even the darkest clouds. His love and peace have the final say and hope is never lost. We are still moving forward just not in the way I had hoped (I was really praying for no more major surgeries).

'Show me your ways, O Lord, teach me your paths. Guide me in your truth and teach me, for you are God my Savior' Psalm 25:4-5

Then today, Carson's speech therapist came over and she gave me her fortune (& on the back was my lucky number ; )

Not too long after that, as I was thinking about surgery and the miracles I hope to see, namely getting the trach out, Carson comes up to me with a 'letter' he wrote in his hands. "Mom, this says, don't be afraid." So the tears just start flowing and I have to explain why I'm crying : ) Once again...God speaking through Carson!

Do not fear, for I am with you. Do not be afraid for I am your God, I will strengthen and help you. I will uphold you with my righteous right hand. Isaiah 41:10

On top of all that...today has been wonderful! Today's high was in the 60's. The boys and I got to play outside, go hiking in our woods, and then have lunch out on the porch! : ) LOVE 60 deg weather in December! Life IS good and these boys make it WONDERFUL! Love to all!

PS...No idea, why they still have their helmets on. Haha!

Headed to Cincinnati Tuesday

Well, here we are...its time to head to Cincinnati. Surgery is scheduled for 11:50 ET on Wednesday, December 9th. After several phone calls, we decided that it was best to try to get this surgery/evaluation done despite the fact that Carson is not 100%. He feels and acts fine but he has a runny nose and drainage. I did take him to see his pediatrician this morning and Dr. Cory felt it was fine to go forward, there is no lower airway involvement. I am praying that all goes well and that this is the best decision. I WOULD like to have this step out of the way so we can continue on with all the wonderful Christmas festivities.

The boys had a wonderful Thanksgiving and are totally in on all the Christmas preparation. They helped me get all the decorations out and we finally got our tree yesterday and decorated it last night. They had a ball and we only lost one ornament ; ) Their excitement makes the holidays that much better.

Thank you for the many prayers and positive thoughts! Oh, this surgery should be fairly quick...they are planning to do a bronchoscopy with a balloon dilation (the dilation just involves inflating a balloon inside his airway to break any scar tissue, leave it for a few minutes, and then deflate and remove it).

Surgery rescheduled!

Thank you all for the prayers! We decided to reschedule the surgery yesterday. Carson is feeling better and acts totally normal but still has a runny nose and cough. After talking to multiple people, no one could say with much confidence that surgery would be a 'go ahead.' And we didn't want to make the trip only to be sent home. So we decided to postpone surgery...it was rescheduled for December 9th. As much as we wanted to get this next step under Carson's belt, I think this is best. Just praying Carson is healthy in December...stay warm if you are in this cold front and if you aren't...lucky you...enjoy for us!

4th Birthday!

The boys had a great birthday and we had some wonderful weather in the days around it to be able to enjoy the outside...the boys (& my) favorite place!

Please stick in a prayer for guidance and for healing...we are supposed to go to Cincinnati this coming Sunday for a bronchoscopy on Monday (Nov 23rd). Both of the boys have had runny noses, sneezing, and Carson has had a really bad cough the last couple days (I think from all the drainage). I'm planning to call Cincinnati tomorrow to get their thoughts. I just want the best decision to be made, whether we go as scheduled or not, so they can get the most accurate 'picture' of his airway (& thus the best plan for the coming months).

Here are some pictures from their Paw Patrol party!

Who knew a bunch of tape could be so fun!

And Flarp produced the most laughs!

'Egg' races

They played on their scooters the rest of the evening!! I LOVE sunsets!

Poppy and his grands!

Blowing up balloons for C & K's actual birthday morning

LOVE!!

Check out these big boys!

They are sure growing up!

11.11.11

I'm so thankful for today... playing at the park, going down slides, running, playing in leaves, eating cupcakes before we ever had lunch...

11.11.11 ...Four years ago, Carson was going through a life saving surgery (his body was shutting down because of a 2+ pound teratoma on his neck). It was a miracle surgery...no one knew what the outcome would be but we were all praying. He went IN to surgery with facial features that you could hardly recognize and came out battered and bruised but with all those sweet, perfect facial features in place (complete with a 'butt chin' just like his daddy and Kellen)! I thank the Lord for the surgeons and nurses that day...those that took care of our baby when we couldn't. I'm so thankful that we've had four years with Carson, his joyful laugh, contagious smile, and all his silly antics. We didn't know what was in store for us (& thank God because it has been rough at times) but the joy overcomes it all! God truly knows what we need when we need it. One of those being Kellen...not just a brother but a twin who can support Carson and ground us in only a way a child can! Sometimes we have to wait days or years to see God's plan (or maybe we will have to wait to ask him face to face on some) but we CAN put our total trust in God and just focus on finding joy in each and every moment!

Thank you to so many of you that have prayed for them since their birth (& even before)...I will never be able to thank you all enough for the support and love that have been showered on our entire family!

P.S. The boys had a wonderful 4th birthday...it was a beautiful day to celebrate (I'll get some pictures posted soon.)

Halloween & upcoming Birthday for now

Oops, I forgot to get an update on here when we got back.

Carson was a rock star once again...other than a few tears because he is smart enough to realize what is going on right before surgery. He was his normal happy self. We got to stay at the Ronald McDonald house again which is so wonderful and so convenient  (it is right across the road from the hospital). The bronchoscopy was a quick procedure (after a short delay on surgery time). I think Carson's airway looked about like the doctors expected at this stage after a reconstruction. His airway still had some swelling and inflammation around the vocal cords, which they said was expected. And, in Carson fashion, his airway, of course, is NOT typical. I think the surgeon used the word 'torturous' meaning that it is NOT a straight, wide open shot. It has some curves and twists which is due to developing with a teratoma and then also because of the original resection of the teratoma. And there are still areas that are 'floppy' and not as rigid as we would like but they also were quick to point out that the airway does not need to look pretty or normal, it just needs to be functional. It is still a wait and see game...in baseball terms, they are still waiting to see if they hit a double or a home run with the reconstruction surgery. Let's pray for that HOME RUN!!! We will go back again on Monday, November 23rd (the week of Thanksgiving) for another bronchoscopy, to further evaluate the healing and airway. Carson's first words after surgery (in the PACU) were "I want to go see Kellen...I want to see Nana and Kellen." Love that sweet boy and his positive spirit!!

We got home early evening on Friday and then got to have a wonderful Halloween weekend with family!

Ryder (Preston), Rubble (Carson), and Marshall (Kellen)

Our three pups (Rubble, Marshall, and Skye)

Beyond cute!

With Mimi, Papa, and Meredith

They were quite the trio!

Scope is scheduled for 8:45 am ET Friday

Carson's bronchoscopy is scheduled for 8:45 am ET on Friday. We will head up there tomorrow (Thursday) so we are having lots of fun today, especially since we got a break in the rain. Plus, rain means more puddles for the boys to play in and ride their bikes through : ) We are carving our pumpkins this afternoon. We will be ready to have this surgery behind us, hopefully with good news, and then back home for Halloween. Carson and Kellen (& Ellie) are going to be different pups from the Paw Patrol show on Nickelodeon.

Amazing!!

We are home! We actually got to come home on Friday... a wonderful surprise to us! The doctors said his airway looked really good. There was little bleeding and inflammation when removing the stent which is why we got to come home early. However, as they reminded us, we won't truly know the success until this coming Friday, when they will do another scope. We got home late Friday but it was so nice to be home! Carson has bounced back wonderfully (much better than me...I feel like I'm still recovering from the emotional journey ; ) It is the most amazing thing to hear his voice again! I can't really put it into words but it is wonderful! His voice is actually clearer than it was which I believe is because his airway is more open and more air can move through his voicebox. I often just catch myself smiling or staring at Carson in wonder as he goes on and on about this thought or that. To hear the boys talking to each other again is the most beautiful gift!! Thank you God!!

I'm not sure why I have such a hard time giving all my worries and anxiety over to God because I know his plan is good and better than anything I could every dream but I continue to catch myself venturing into the future, into the unknowns, and finding things to become anxious about. Right after surgery, when I was so excited to hear Carson's voice, Carson continued to only whisper or mouth the words without any voice. I found myself starting to worry that somehow by opening his airway, his vocal cords no longer could touch and hence no vibration or voice. "What if I never hear him again?" ...but praise the Lord, we can and it is even better than before. If only I can remember to give all my worries to the Lord, I might hear him better...  Be still...let me show you my wonderful works.

For I know the plans I have for you, declares the LORD, plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11

Lots of laughter during the last hour of our trip trying to get the big trucks to honk their horns...

Playing at the Ronald McDonald House's playground when we got there

The boys LOVE this Ronald!!

Waiting for surgery...

And a visit with cousins (& the chipmunks) before we headed home! What a fun surprise!

Surgery time

Surgery is scheduled for 9:20 am ET. Hopefully all will be on schedule. The OR is only schedule for 60 minutes...so a relatively short surgery : )

5 weeks, already

Well, we've almost made it those LONG, 5 weeks without hearing Carson's sweet voice. YAY! He has really accommodated well and although, I'm sure there were many thoughts/ideas that we didn't get to hear, he still was able to share a lot through gestures and mouthing words. I'm so very thankful for his resilience and amazing attitude! We head back this Thursday for surgery on Friday, Oct 23rd (not sure the time yet). They will be doing a bronchoscopy (to look at his airway) and removing the stent (what prevents him from making noise & what is holding his airway open while the grafts heal). This should only take about 30 minutes. While, they will be able to see the grafts, which were placed last month, we won't fully know the success of the reconstructive surgery until October 30th when the stent will have been out for a week and Carson has another bronchoscopy. My mom and Kellen will be coming with us for this first trip. Carson will stay overnight after the surgery but then we should be headed back home on Saturday.

I am so incredibly thankful for all of you, family and friends, that have prayed along with us. I continue to learn a lot about trusting God and embracing EACH moment as it comes. My mom called this morning with the news that one of my brother's friends passed away yesterday. None of us are promised tomorrow, so it is so important we find joy in the moments, keep our minds focused on the positives and try to make each day count. Carson is SO good at this...just this morning, as I was getting ready to start some medications for these upcoming surgeries, I was explaining to Carson  that we would be starting these medications, one of which is drops that go in his trach and then I have to plug his trach (with my finger) to make him cough, forcing the medicine up above his trach to the graft sites. There is a prayer request in and of itself. We have to do it 30x total (3x for 10 days). Two down, 28 to go. Carson hates it! One, because it makes him cough (sometimes throw up), two, when I plug his trach, it is scary because he can't breathe, and three, it just isn't fun! Anyways...I told him we would be going back to Cincinnati this week for surgery, staying at the Ronald McDonald House, etc. And after it all, he said, 'Oh yea, they have lots of bikes there and a Thomas!' He was talking about the Ronald McDonald House. Always looking on the bright side! I continue to work on finding the positives in all this crud he has to go through...I could learn a thing or two from him : ) Life was never promised to be easy, in fact, sometimes the suffering makes the fun that much sweeter and thank goodness we have other people to walk through the hard stuff with us! THANK YOU, THANK YOU!

For those of you that didn't know, we had a small hiccup in the plans. After Kellen had finally been fever free for about a week, Carson was spared the fever : ), through some major work in keeping the two separated from each other. Keeping them separated was the hardest part! We then hit a bump in the road for Carson...We made an unplanned trip back to Cincinnati the beginning of October because the incision above Carson's trach swelled up. I'm not sure anyone actually knew WHAT happened or WHY but they opened the incision and packed it for 24 hours. That must have done the trick because it is healing well now. It wasn't infected which was good. And the surgeons said it wouldn't effect anything that had already been done or they were planning to do. Praise the Lord! Carson was in the hospital for two nights. He was poked and prodded, put through some unpleasant stuff but he handled it all in stride (like he usually does). Hopefully that was the only hiccup!

Rejoice in the Lord always! I will say it again, Rejoice! Philippians 4:4

Too much...Flowers (weeds) they picked on their bike ride!

DQ stop on our surprise trip to Cincinnati!

Ellie came to visit!

We finally got our hammock up! : )

S'more fun with cousins!!

These boys love airplanes, jets, helicopters!!!

Back at Home

Carson, Preston, and I returned home Wednesday. It was earlier than we were expecting and thank goodness, Carson was getting so bored being in the hospital. We left Wednesday morning right after they did the trach change. The doctor wanted to take his trach out so he could see the incision and the stoma site but Preston was able to put the new trach in. Carson did amazingly well! There were a few tears but it went much better than it could have been. Praise the Lord! I had prayed for the trach change throughout the night.

I was so proud of Carson during this hospital stay and recovery! He took each obstacle as it came and usually had a huge smile, wave, or high five afterwards even though there were often tears in the midst. It didn't help that the doctors did their rounds at 6 am. So, most of the unpleasant things were also Carson's wake up call. Poor guy! Kellen was a trooper also. He broke up the monotony for Carson by coming to visit. While, it was a little confusing to him to see Carson IN the hospital, he always wanted to come visit Carson and Mom said that as they were leaving one day, Kellen said, "I miss Carson."

We are adjusting being at home with a new feeding schedule. They said most kids don't eat as well with the stent in place because it feels very awkward when you swallow. Carson has actually surprised us but still is not eating and drinking as much by mouth so we have to do a majority of his feedings by Gtube. This means he is getting ALOT more liquid than he is used to and we have to do more feedings. But the biggest adjustment is just not being able to hear Carson. He is doing a good job of mouthing what he wants to say but he can't get our attention unless he walks over to us and there are many things that I can't figure out what he is trying to say. It is very frustrating for Carson, and for me. It breaks my heart that he isn't able to share everything that he is thinking but I'm trying to keep in mind that it is short term. Kellen has asked several times, 'Will Carson being able to talk now?' 'When will we be able to hear Carson?'. But Kellen is adjusting also and does a good job of trying to figure out what Carson is saying. Just today, they were riding their bikes and since Carson can't tell Kellen stuff. Kellen would just follow Carson around and mimic what Carson was DOING on his bike. I'm so thankful for that TWIN CONNECTION.

While I was feeling rather overwhelmed and emotionally drained with the new schedule and just the stress of not hearing Carson and trying so hard to understand everything he is saying, I was reminded to take each day at a time and not get too far ahead of myself. Again, just to stay in the moment and find the joy in EACH moment.

The Lord is my strength and my song; he has become my salvation. He is my God, and I will praise him. Exodus 15:2

I was reminded AGAIN to not get ahead of myself when KELLEN started running a fever Friday night! Of all things... Not sure how Kellen would have gotten sick but none the less, he has ran a fever since then. Please stick in some prayers that somehow, someway Carson may be spared and that Kellen recovers quickly. We're are trying to keep them separated which is so very hard!

Thank you again for the many prayers while we were in Cincinnati and the continued prayers for Carson's healing. We will not know the full success of this surgery until October 30th when the stent has been removed for a week and they go back in to see how Carson's airway is healing and responding.

Thumbs up!!! (as we were leaving Cincinnati Children's)

Carson was doing his happy dance when he recognized how close we were to home! : )

LOVE that smile!!

Back on their bikes again!!

Ice cream with Nana before she went home!

Away we go!!!

Pictures of the last two days or so! First, Kellen and Nana on the way home to Dexter, Monday! Had to make a stop for ice cream. Second, today's creative activities to keep Carson occupied while still in the hospital! Liz and Preston are starting a new fashion statement. Third, Carson and Kellen's hug when Kellen had to go home with Nana. Carson was such a trooper as he wanted badly to go too.

Update: Carson is a rockstar as we all know and has so many wonderful people praying for him. A nurse told Liz and Preston today, Carson has recovered from surgery better than she has seen in a long time or possibly the best ever. We all know what a trooper he is but it isn't just us!!!

Carson has done very very very well the last two days. He has been BORED, which means he is back to himself and not wanting to be tied down in a hospital. Praise the Lord. The plan is to leave early tomorrow morning, yeah for early discharge from the hospital. Before leaving, they need to do a trach change and Liz is concerned the doctor's are going to do it. Carson is not particularly fond of doctors at this point, so please be praying for patience, smooth sailing, and no pain for Carson! Safe travels for the Clarks to get home to Dexter!

Thank you thank you! So excited to see all the Clarks at home in Dexter tomorrow.