Happy 7th Birthday Noah’s 7th Birthday

How has it already been 7 years since Noah was born….some days it feels like forever ago and then every birthday as I look at the old memories and photos on facebook, I am reminded that it wasn’t that long ago…that the God who got us through those months of unknowns is still the God today who is continuing to help us along this path of unknowns as Noah grows each year.

Tonight I took some time to read over some of the old posts on this blog that I created before Noah was born….and as I sat in tears reliving the fear, pain, anxiety, stress, relief, comfort, love and so on, I feel some guilt that my faith is not how it was back then. I am reminded how easy it is to go through the motions of life and not fully rely on God. To not put my trust fully in Him when I do feel anxiety and fear and let those emotions take over my body. Before Noah was born when I started writing this blog, it was honestly only my faith that got me through and so tonight I am thankful for this time to be reminded of how good God is, and how amazing and wonderful his love is for us. When I look at Noah I just see God’s love and faithfulness. I am thankful for these reminders and pray that I will continue to remember.

Now for the update on Noah since many of you have asked that I update on this blog. ( I do want to apologize for the silence the last few years. I am thankful that so many of you continue to lift us up in prayers and ask about Noah). Noah is doing really well. He is in 1st grade at Faith Christian School which is not too far from our house. I don’t want to brag on Noah too much but he is very smart and has amazing handwriting. He is doing very well in school and continues to light up the hallways with his smile and sweet personality. I think he constantly amazes people when they see him write with his big hand and his handwriting is just beautiful. Even after another hand surgery this summer to shut down the growth plates in his hand, he worked hard…lots of hand therapy with an amazing hand therapist who pushed him in all the right ways to regain his strength and dexterity in his hand again. We continue to go up to CHOP (Children’s Hospital of Philadelphia) once a year to meet with the Vascular Malformation Team. This team is made up of lots of doctors who oversee Noah’s care. These doctors include Dermatology, Interventional Radiology, Oncology, and Orthopedics. This team specializes and sees children with CLOVES syndrome. We also continue to go to UVA hospital every 6 weeks to get bloodwork, ultrasounds, and to see our Oncologist. This oncologist works with our oncologist at CHOP which is amazing because we no longer have to go up to Boston Children’s Hospital anymore. (Less travel=YAY! 🙂

Noah is now on a new medicine called Alpelisib which studies have shown to be very successful when treating CLOVES. The use of this medicine wad discovered in France and then was used on a trial basis in the United States. Noah was one of 13 kids with CLOVES to try this new medicine. The medicine is now FDA approved and more children are using it now in the US. Noah has been on this medicine for the last 2 years….and even though it doesn’t seem that the medicine is shrinking the growths inside of him, they are keeping the growths stable, We are also working on finding the right dose for Noah. Thankfully Noah does not have any side effects from this medicine and is able to use it without a problem.

There is nothing scheduled for Noah at this time in terms of surgeries or procedures, and for that we are super thankful. We continue to go to UVA and CHOP for routine doctor appointments and the routine MRI that is needed to keep an eye on the different areas in Noah’s body. We are so thankful for the health Noah has and how well he is doing. I am excited to be back on this blog updating you all and will try my best to do better when it comes to updating.

THANK YOU ALL for your continued love and support!

Good News in the New Year

Hello Friends,

I am so very sorry that it has been so many months since I last updated you all on Noah’s progress.  In one way that is a good thing….no news is good news 🙂 Especially in Noah’s case.  After Noah got his procedures done in Philly and Boston of last Summer there was not too much to update.  It has been so weird to not have any procedures at the moment for Noah.  Our schedule is filled with follow up appointments and check ups but no surgeries or procedures which is awesome!  A friend of mine asked me what I was going to do with myself…haha since it was so weird to not have to plan traveling or anything right now.  God is good and gives us times of quiet peacefulness…even in the storm.

We do have good news tho to update you all with….we met with Noah’s hand doctor in Philly at the beginning of January where the doctor took lots of hand X-rays to compare the X-rays we had in May right before Noah got hand surgery.  RECAP on the surgery for Noah’s hands. (Since it has been awhile) The hand doctor closed the growth plates in Noah’s middle finger and bottom half of his ring finger on his left hand.  His left hand is the bigger hand.  The surgery was pretty intense and took about 5 hours to complete.  The doctor also debulked (took out the fatty tissue) around the fingers as well.  The surgery went well and Noah did great with recovery.  With a lot of Occupational therapy and amazing therapists Noah got all of his dexterity back after a few months of his surgery.  It was amazing to see him work so hard to be able to use that hand again.  He is definitely a very determined little dude.  The doctor had told us that there was no guarantee that the hand surgery would work….there was no guarantee that the growth plates would close and his hands would stop growing.  This is one of the most frustrating parts of having CLOVES.  You don’t know when the growth will start or stop.  There is no pattern to base it on.  Frustrating right??? We left the hand doctor in May saying we would follow up in January of 2020 to see if the surgery worked by comparing x-rays.  The wait was hard at times because it was very hard to myself and Andrew to really be able to tell if his hands had stopped growing.  January came and we made our way to NJ/Philly to celebrate Christmas with my family and then see the hand doctor.  They took the x-rays and we waited in the room.  The wait felt like forever! I kept telling Andrew that I was nervous and scared that they had grown.  I was filled with a lot of doubt…which makes me super sad because I had prayed a ton that God would shut down the growth plates….I knew He could do it but I still had doubt.  We ultimately knew that God had a plan with this and that He would help us get through whatever the outcome was. The doctor came in with the new x-rays and said, “they have closed!” I froze and tried to comprehend what he had just said.  “The growth plates are closed and his fingers haven’t grown in length since May. The surgery was a success so far.” I was so excited…WOW…..it worked. The surgery worked.  There is a huge chance that Noah’s hands won’t grow anymore length wise and he will be able to grow into his hands.  HOW COOL IS THAT??? AHH! Just writing that now gave me chills! 🙂 God is good! The doctor told us he was amazed that it worked because he also was worried it wouldn’t work because of the CLOVES.  TAKE THAT CLOVES SYNDROME!

So where do we go from there? Well at this time there is still no surgery planned.  The doctor wants to wait at least 6 months until he does more surgery on the other fingers.  He started this surgery early with the thought that it wouldn’t work right away so now we can wait which is awesome! We go back in 6 months again for another recheck of his fingers.  We continue to pray that the growth plates stay closed and that his fingers don’t grow.  We will have to do more debulking of his fingers because that didn’t seem to work.  We are just so happy and very thankful to God for this amazing news! 🙂 It feels so good to know that it worked.  It gives us hope for Noah’s future with his hands since they have become something that lots of people notice now.  Thankfully Noah loves his big hands and thinks they are super strong…which they are…but knowing that maybe…just maybe he won’t have to have huge hands as an adult is awesome and as a mom makes me so happy and thankful.  We continue to thank you all for your prayers and constant support.  God is good and the ultimate healer! 🙂

Will update again soon. 

-Melinda 

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Bruised Legs and Sore Bottoms

Bruised legs and sore bottoms would pretty much sum up the last month of Noah’s life. It has been a pretty rough month in that respect.  Noah’s legs are super bruised, sore and swollen.  They look terrible…and they actually feel terrible too.  He also has a sore bottom from where the doctor worked on  his sciatic vein.  Thankfully that has recently improved a ton and he is able to sit a bit more without so much pain.  So yea…it all seems pretty bad but actually the doctor at Boston thinks Noah is doing great.  We were a bit concerned so we sent him lots of pictures of Noah’s legs and he said they looked really good considering all the stuff that he had done to them.  We are super thankful for that and it makes us feel a little better.  Noah is able to still able to do things like run around, swim, ride his bike and play with friends so that is all a very big blessing! The doctor told us he would only be concerned if Noah wasn’t able to do all those things so again we are thankful he is able to still enjoy his summer,

The MRI results that we got done in Boston last month showed that his spine looks great which is a huge blessing…that is what we were concerned about with him and the main reason for the MRI.  But of course Noah being Noah there was another concern. There seems to be some kind of tissue/growth on or by his lung.  They aren’t sure exactly what it is at the moment but they do know that it isn’t causing any problems.  The doctor will want to work on that tho but he said we could wait until next summer. PRAISE THE LORD for that! I was super worried we would have to go back to Boston again this year for another procedure. We are starting to realize more and more that Noah’s CLOVES syndrome mainly affects his vascular system which is why he needs to get lots of different procedures done in Boston by a very specialized doctor.  I do feel like we left Boston this last time understanding CLOVES more and how it works and affects Noah specifically.

Now onto the next procedure…We leave in one week for Philly.  We are scheduled for Noah’s hand surgery on July 23rd.  Not sure yet what time. The doctor at CHOP is going to remove the growth plates in his middle finger on his left hand. He is also going to do half of his ring finger as well.  He really wanted to make sure that this would work for Noah before doing all his fingers and putting him through so much all at once.  It is a very long intense procedure that he said would take about 5-6 hours.  The doctor is also going to debulk/take out the fluid in the middle finger as well.  Noah will have to spend at least one night in the hospital. We are praying it will only be one night but it will really depend on his pain level and how he is feeling.  We wish he didn’t have to go through another big procedure this summer BUT we also know we have to do this hand surgery now because his hand is growing very fast right now.  We are happy that the doctor only wants to do one and a half fingers right now because we do want to make sure it works before committing to doing all his fingers.  There is always the risk of scar tissue and loosing some of his dexterity but Andrew and I really feel like we want to give it a shot for Noah’s sake.  We would love for him to be able to grow into his hands someday.  We would appreciate prayers for this upcoming surgery.  We are all a bit nervous how it will affect Noah….we haven’t talked with him about it yet and we just want to find the right time/right words to talk to him about it.  So thankful that he know that we can pray to God for everything and that we take our comfort in God! It really strengthens my faith to hear him talk about praying to God. I also am asking for prayers as I will be traveling without Andrew for this adventure.  Andrew really needs to work and we are saving a week of his vacation for a beach trip in September that we all REALLY NEED! 🙂 I am really not too scared to go alone….BUT I am a bit nervous how I will be with Noah before and after his surgery.  Andrew is our ROCK when it comes to the hospital so not having him there may be a bit difficult.  I am super thankful for my Oma who is here in Virginia this week helping us get ready for this trip and making the trip to NJ with me and the boys.  I am also thankful for family and friends who will be coming with me to Philly to help with Silas and be of moral support for me.  🙂 THANK YOU SARAH COOK ❤ Also thankful for church family who open their home to us in Philly while we are there.  GOD IS GOOD and ALWAYS PROVIDES!  So I go back to the title of this blog post…it has been a rough month in some ways BUT it has also been an awesome month.  We have had a blast at the pool and lake with friends, the boys have all been healthy which has been such a great blessing, my anxiety/fear hasn’t ruled my daily life, and we have spent tons of time with friends.  Noah was even able to attend our VBS this past week.  It has truly been a good month…and that is ALL GOD.  The song Scars by I am They has been playing a ton while I am in the car….and I just think it is God’s way of helping me remember of his goodness to Noah and myself.  We look at Noah’s scars and we remember how much God has brought us through and how far we have come.  The scars remind us of so much hurt and pain but also the joy of being on the other side.  I know there will be so many more scars for Noah but I am thankful for those reminders that God is good and he is taking care of all of us.  Here is part of the song I would love to share with you all:

So I’m thankful for the scars
‘Cause without them I wouldn’t know your heart
And I know they’ll always tell of who you are
So forever I am thankful for the scars

Now I’m standing in confidence
With the strength of your faithfulness
And I’m not who I was before
No, I don’t have to fear anymore

 

If you haven’t heard this song you need to look it up!!!!

Here are a few pictures of our summer fun this last month! 🙂

I will keep you all updated on Noah when he has his hand surgery.  THANK YOU ALL FOR YOUR CONSTANT LOVE AND SUPPORT.  We feel your prayers all the time and we see so many blessings around us.

Love the Hankos

 

 

A Week of Recovery

We are recovering from a week of travel and doctor appointments/hospital visits.  It feels so good to be home again and know we will be home for awhile until our next adventure. (Noah’s hand surgery at CHOP July 23rd)

Noah is doing pretty good overall….everyday seems to be better for him.  He struggled with a lot of pain in the beginning of the week along with a sore bottom due to the procedure.  This procedure was definitely a lot more intense and the doctor told us that pain and swelling is to be expected…and that the pain could last for 2-3 weeks.  I am comforted to know that this is normal even tho it really stinks 😦 We have found that if we keep Noah’s pain meds on schedule he does better and doesn’t seem to have much pain.  We are still waiting to hear the results of the MRI. I am hoping the doctor will call me tomorrow or Monday.  We have a follow up visit at UVA hospital with our doctor next week Wednesday where he will check on Noah’s legs and take pictures to send to Boston.  It is great that UVA and Boston communicate and can share info. Saves us a trip back up to Boston.  The biggest things we have to watch for are high fevers or super intense pain….those could be signs of infection.  Please continue to pray for Noah that he will stay healthy and that he won’t get infections.

The procedures Noah got done is super hard to explain and understand….Andrew is so much better at telling people what Noah got done….so I am not going to explain it (If you have questions talk to Andrew lol) but what I do understand is that the blood flow inside of Noah is finally flowing correctly and not flowing into these extra veins…WHICH IS AWESOME!!!! The doctor is hoping that because of the normal blood flow Noah won’t have issues with the veins in his legs anymore….but only time will tell.

We wanted to thank you all again for your prayers and encouragement.  It is hard to thank everyone personally but please know that we see you and we are so just thankful for you all! 🙂

In other news, Ethan is taking swim lessons at the YMCA and loves it! He is doing really well and we can tell he is going to be our water rat.  Silas just got new glasses which are super adorable.  It is going to take awhile to get him used to them but we are thankful that they will help his eye sight.  He also had a hearing test where he seems to have fluid in his ears causing him to not hear as well so we will meet with the ENT doctor to discuss tubes for him in the future. While we were in NJ we were able to meet our adorable nephew Ryder.  He is so sweet and we love him.  He is doing really well and we are just so thankful to God!

Prayer requests: Noah’s pain will go away and he will be able to get back to normal life and play.  I know he wants to be able to swim and play outside but it is hard for him right now.  Please also pray that we all stay healthy so that Noah can get his hand surgery scheduled for next month.

Who has the CONTROL?

I would be lying if I told you the last few months have been great…or even good…or okay…in fact they were down right awful. Not awful because of scary health issues, or really serious things, but my relationship with God. My faith in Him to get me through my fears and anxieties.   I don’t tell you this to make you feel bad for me…or to complain…but that you would pray for me.  The past two months I have felt the need to be in control of EVERYTHING! God definitely reminded me over and over again that I am NOT IN CONTROL and if I were…LIFE WOULD JUST CRUMBLE AND FALL APART!

BUT how do we let go? How do we really say God is the controller in my life?? We turn to His word and constantly remind ourselves that God is the blessed controller of all things.  HE is the KING over all KINGS and the MASTER of all MASTERS. (1 Tim. 6:15)  HE IS THE RULER OVER EVERYTHING….which means I AM NOT IN CONTROL…nor should I want to be in control. I know for myself I want the control because I don’t want certain things to happen…especially to my children. (Most mothers would relate) I don’t want my kids to get hurt or sick.  I want to control everything that happens to them.  My fear of not having control triggers my anxiety and it’s just a downhill spiral from there.

So for example when we have two straight months of sickness in our house…and I can’t control any of it…my anxiety is winning and I am out of control. I loose my faith in the One who has carried me through some of the darkest days of my life and brought me and my family to where we are now.  BLESSED.  We are blessed because God controls our lives.  I read somewhere once (can’t remember where but I have it written down to be constantly reminded of this truth) and I quote, “Every assignment (or situation) is measured and controlled for my eternal good.  As I accept the given portion, other options are cancelled.  Decisions become much easier, directions clearer, and then my heart becomes quiet. (NO ANXIETY) A quiet heart is content with what God gives.” So tonight as I sit here writing this…I feel like my heart is finally starting to feel quiet. I feel my anxiety slowly melting off my body and vanishing into thin air.  It’s not to say that if one of my kids wake up sick in the night the anxiety and control won’t come back…but you best believe I am going to do everything in the power God gives me to quiet my heart and let God have the control.

“The beginning of anxiety is the end of FAITH.  The beginning of faith is the end of ANXIETY.” How cool is that???

I haven’t updated much about Noah since he had his big procedure in Boston in February….so here is the most recent updates:

We head to CHOP (Children’s Hospital of Philadelphia) May 22nd to meet with Noah’s hand doctor to discuss and schedule Noah’s hand surgery this year.  We knew this day would come since he was born….it is just crazy to think that this is the year.  Noah’s hands have grown in waves….at times they didn’t seem to grow much at all and then other times its like they grow overnight.  It can be very frightening at times when I notice how large they have gotten.  Today in church Noah was sitting next to me coloring. It is pretty amazing what this kid can do with those big hands.  I sat there amazed at how well he could maneuver the marker, take off the top, and then color.  He has it down to a system.  I felt an overwhelming sense of sadness at that moment because having hand surgery means scar tissue, which means stiffness and lack of dexterity. 😦 ughhhhh  Noah had hand surgery on his right hand when he was about 14 months old and that hand does not have much dexterity at all.  His left hand, the hand we will do the surgery on, is the hand he uses for everything….so yea…that part is kinda scary.  Now there is always a chance that with lots of therapy and Noah’s determination, he can gain back most mobility but only time will tell.  The fingers on his left hand have gotten really long and also really wide so the surgery needs to be done.  We need to try and stop the growth from continuing in his fingers.  The doctors are also hoping to debulk (remove the fluid) around his bones in his fingers.  This doctor appointment is a big deal because we need to weigh the pros and cons…discuss the risks and what ifs, and also decide how many fingers to do.  (Talk about a lot of pressure…hahaha) We need prayer for wisdom and peace. Peace to know we are doing the right thing for Noah.  I will update you on all that once we have that appointment and things are scheduled.

The next big thing we have going on with Noah is another trip to Boston Children’s Hospital June 4th-7th. The doctors at Boston want to get a very detailed full body MRI of Noah to have.  They want to check his spine and make sure that his overgrowth is under control and not growing.  When the doctor who did his procedure in February did imaging he noticed a few things he wanted to have checked out in further detail.  After his MRI on the 4th, we are meeting with the CLOVES specialist doctor to talk about a new drug treatment that may be a good fit for Noah.  We don’t have too much details about it at this time but we are excited to learn more and discuss it with her.  Prayers again for wisdom as this is a clinical trial and there isn’t too much info out on it yet.  Noah will get another big procedure done on his legs June 6th at 7 am.  The doctor needs to finish closing his veins in his legs.  This procedure should only take about 4-5 hours because they already got most of the imaging done the first time Noah got this done.  Noah will have to stay overnight again for precaution and for pain management.  So we are asking for lots of prayers that week…it will be a very full, busy week for Noah….lots of anesthesia which makes me kinda nervous but we are super thankful to get this done and over with before the summer really starts.  We hope that after this procedure we won’t have to do anymore for awhile.  Again…I am not in control so we need to trust God and know he will carry us through it.

Prayer requests:
HEALTH for our family.  We have all be sick with lots of different things these past two months so no more sickness would be awesome.  Pray that Noah stays healthy so he can get his procedure and MRI done in Boston.

Safe travels as we head to CHOP this week and then Boston next week.  Pray for Silas has he tags along with us.  Pray for Ethan as he spends time with family and is away from us.  Pray for Noah as he is older now and stuff like this scares him so much.  We have noticed his anxiety and fear is high during this time and we just ask that he feels God’s peace.

My anxiety….that it will be control…and maybe even go away! That I would put my trust in God and NOT myself.

THANK YOU all so much for prayers and support.  We are thankful for each one of you and like I always say…we feel your prayers…they surround us while we go through these things and get us through.

Will update again soon! 🙂 For now…enjoy these funny pictures of the boys! ❤

 

Also a lot of you have asked me how baby Ryder is doing….HE IS DOING AMAZING! GOD IS GOOD! He is a healthy boy and we are just praising God everything for this miracle baby. Here is a picture of him and his sisters.

Back from Boston

We are finally back home.  We arrived home two days ago and have been trying to get back to our normal everyday routine.  Not super easy after being gone for over a week and then dealing with post opt care for Noah.  (I am not complaining) Noah is doing pretty well.  Here is an update from what the doctor told us after finishing Noah’s 9 hour procedure: It has been a very long day. The doctor said that there is no real concern about the veins in his neck and spine after doing the additional imaging so that is good news. The main part of the procedure was doing the imaging for his neck spine and his legs. They put “coils” in the top part of the extra vein in each leg. They also did schlerotherapy in the blebs on his legs. (This involves injecting an irritant into the bleb which causes it to shrink up and scar from the inside) This will hopefully fix his bleeding problem. We will have to go back at some future date so they can close the bottom part of the veins in his legs but the DR said that he was very satisfied with how well the procedure went and what they were able to get done. Noah was not too happy waking up but is doing very well now. He ate his dinner and is sleeping peacefully. Thank you all for the prayers!

Noah and Andrew spent one night in the hospital for observations.  They were able to give him pain medicine and just make sure he was doing okay before discharging us.  Noah was doing really well the next day and we asked the doctors if we could travel back to NJ early. (the original plan was to stay in the Boston area for a few days afterwards to make sure Noah was okay before traveling all the back to Virginia.) The doctors told us that because Noah was doing so well we could go back to NJ. We were super thrilled about that because it meant extra time with my family. Noah was also very happy to get back to Ethan, Omie and Tedo. We traveled back to Virginia on Monday and are very happy to be home.

Noah is doing pretty well…the doctors told us that Noah would not be back to his normal self for a least two weeks.  I need to remind myself of this often because there are times when the devil uses my anxiety to make me super worried about Noah and I start to freak.  FEAR IS A LIAR!!! Ethan was super excited to go back to school yesterday.  He missed a few weeks due to keeping Noah protected from sickness and then being in NJ. We have decided to keep Noah home until he is feeling back to his normal self.  You can tell that Noah still has a lot of discomfort at times and needs rest and Tylenol to feel better. The doctor needs to do another procedure similar to this procedure in a few months because there are still veins in Noah’s legs that need to be dealt with. He did reassure us that it won’t be as long because now they have all the imaging they need.

While in New Jersey we were able to celebrate Silas’s 1st birthday! It was so much fun to do this before going to Boston.  Silas’s actual birthday was the same day as Noah’s procedure (which was a very long not enjoyable day) so to celebrate it ahead of time was a treat.  We can’t believe he is a year old already….he brings so much joy into our lives everday! God knew exactly what he was doing when Silas came into our lives and I am so thankful that I see it that way.  I still remember how I first felt after discovering Silas has down syndrome and not being very happy. Now we can’t imagine life any other way and for that I am thankful for! GOD IS GOOD! HAPPY FIRST BIRTHDAY SILAS JAN!

My friend Sarah held a bake sale to help us raise money for Noah’s procedure and our stay in Boston.  She was able to raise more then $2,600 dollars.  I just wanted to take the time to thank everyone for their help and support.  We were blown away by the outpouring of love and support and we are just so thankful for you all! We are thankful that we do not have to walk this journey alone! Your prayers are felt everyday and again just thank you so very much!!!!

Please continue to pray for Noah as he heals. Pray that we are able to all stay healthy and avoid the sickness that is going on all around us. We just want Noah to heal without any other  issues.  Also please continue to pray for my nephew Ryder who is in the NICU.  Pray that he continues to heal well after his surgery. Also pray for my sister and brother in law as they try to adjust to normal life and NICU life. ( Having lived through that…I know it is hard and they need strength from God)

Here are some pictures from the last week while we were up in NJ:

SILAS ❤

Ethan had a blast in NJ with family. It was so good to know that he was well taken care of and being spoiled while we were gone. Here he is cuddling with Aunt Jenna.

HAPPY 1st BIRTHDAY SWEET BOY!

catching up on sleep after the procedure. Noah had a hard time when he first came out of anesthesia and needed lots of cuddles. I didn’t mind at all.

The day after the procedure. Noah was feeling so much better!

Noah felt so much better the next day!

PEACE OUT BOSTON! Until next time.

Just Be Held

Hold it all together
Everybody needs you strong
But life hits you out of nowhere
And barely leaves you holding on

And when you’re tired of fighting
Chained by your control
There’s freedom in surrender
Lay it down and let it go

So when you’re on your knees and answers seem so far away
You’re not alone, stop holding on and just be held
Your world’s not falling apart, it’s falling into place
I’m on the throne, stop holding on and just be held
Just be held, just be held

If your eyes are on the storm
You’ll wonder if I love you still
But if your eyes are on the cross
You’ll know I always have and I always will

And not a tear is wasted
In time, you’ll understand
I’m painting beauty with the ashes
Your life is in My hands

So when you’re on your knees and answers seem so far away
You’re not alone, stop holding on and just be held
Your world’s not falling apart, it’s falling into place
I’m on the throne, stop holding on and just be held
Just be held, just be held

Lift your hands, lift your eyes
In the storm is where you’ll find Me
And where you are, I’ll hold your heart
I’ll hold your heart
Come to Me, find your rest
In the arms of the God who won’t let go

So when you’re on your knees and answers seem so far away
You’re not alone, stop holding on and just be held
Your world’s not falling apart, it’s falling into place
I’m on the throne, stop holding on and just be held
(Stop holding on and just be held)
Just be held, just be held
Just be held, just be held

Songwriters: Mark Hall / Matthew West / Bernie Herms

This song has been on repeat for me today…there is just so much going on and life is sad and hard. There is so much hurt and sadness but yet in the mist of it all God is holding me, holding you…getting us through this “storm” of life. I was talking with a friend of mine yesterday and we were just saying how many babies/children we know who are going through sickness and hardship right now. It just seems to be all around me right now…so again God reminds us in his Word over and over again to find rest in Him…the only one who can give us peace and strength to press on.

A week from today Noah will still be getting his procedure (Lord willing) Just a reminder of what it is he is having done: Noah has two AVMs: An AVM is short for Arteriovenous malformation. An AVM is a tangle of abnormal and poorly formed blood vessels (arteries and veins). They have a higher rate of bleeding than normal vessels. AVMs can occur anywhere in the body. Noah has one near his spine and also one in his neck.  The doctor needs to figure out where the blood is going and then stop the blood from going there.  There are a ton of big words for what is getting done but I can’t remember them at the moment. Noah also has an extra vein in each of his legs so they will be taking those veins out of his legs.  Thankfully this can all be done without surgery.  (non-invasive) The doctor will be using cameras, scopes, needles, lasers, and catheters to do this procedure. The procedures will take about 6.5 hours. (UGH such a long time under anesthesia) BUT we are thankful that they can do all of these at once, instead of having us come back and forth to Boston a few times.

We head for Boston on Wednesday Feb 13th for Pre opt appointments with the Interventional Radiologist Doctor who will be doing the procedure to go over everything and sign papers. The procedure itself is scheduled for 6:00 AM on Thursday February 14th…and will be all day.  Noah will have to be admitted to the hospital for at least one night and a day to make sure he tolerates everything okay, and also that they can help him manage his pain.  We have been told that these procedures can be painful. At this point I am ready to go and just want to get it over with….it has been something we have been waiting to do for a long time.

Please pray for safe travels as we head to NJ first and then up to Boston.  We are stopping in NJ to meet our newest nephew Ryder.  Ryder is in the NICU and most of you have also been praying for him.  (please continue to pray for him)

We also will be celebrating Silas’s first birthday. His actual birthday is Feb 14th (same day as Noah’s procedure) We are thanking God for this sweet special boy!!!

Pray that we all stay healthy. (God has been so good to us thus far and protected us from a lot of different sicknesses that are going around right now. We are thankful for that and continue to pray that he protects us all.) Noah especially because he needs to be healthy in order to get the procedure in Boston.

THANK YOU all for your support, love, prayers, encouragement and kind words…we are soooooo thankful for you all! We feel your prayers all the time!!!!

Please pray for Noah’s anxiety.  We talked a little bit about Boston and all he keeps asking me is: “Are the doctors going to hurt me mommy? I don’t want needles or shots” Sweet boy is very scared of blood work which he has to get every month.  Thankfully we can almost guarantee they won’t have to “hurt” him with anything while he is awake! In this case anesthesia is great because he won’t feel anything.

Also pray for Ethan as he will be staying with my family in NJ. He really wanted to come along and this is a very special treat for him.  He prays for Noah all the time and we are thankful for his kind heart and wanting to take care of his brother.

Pray that Silas does well….he is coming with us to Boston…so we are asking for prayer that he continues to be easy going and happy…and that we can give Noah the attention he needs after his procedure.

Pray for our host family that so graciously are taking us in and letting us stay with them while we are there.  We don’t know them yet but we are thankful for them!

I will write more updates once we get to Boston.

THANK YOU AGAIN for everything!!!!! ❤ and remember let God hold you and give you peace!

 

 

Sweet Baby Ryder Forest in the NICU.

 

3 Years Ago Today

I love the Facebook memories that come up everyday.  (For those of you who don’t have Facebook, memories will pop up on your page from past years that you posted.) Some memories during this time are hard to see…and then some memories are SOOO awesome to see. This picture came up today: THREE YEARS AGO IN THE NICU

 Look at the lymphangioma in his neck…it was so big! He also needed oxygen at the time and was having difficulty swallowing.  He was considered a “Difficult Airway” which scared us everyday while we were in the NICU. I had captioned this picture as: Noah is such a happy boy! We had a few rough weeks before this picture was taken and this was the first time in awhile that Noah was happy and smiling.  It was such a blessing and I forever treasure this picture.  It is also a good reminder for today when I look at Noah and don’t even see the lymphangioma in his neck anymore how far God has brought us along and how much he has taken care of Noah.

Newest update on Noah: (sorry I haven’t posted in awhile…life has been crazy busy/lots of sickness) We are headed to Boston Children’s Hospital the week of Feb 12th for Noah’s procedures.  His procedures will be a total of 6.5 hours long. (UGH not looking forward to him being under anesthesia for that long but thankful they can do all the procedures at once instead of us having to come back a whole bunch of times) We meet with his doctor Feb 13th for pre-opt appointment/blood work to make sure that Noah is healthy and well enough to be under anesthesia. We will also go over all the paperwork and talk about what the doctor is going to do in greater detail. February 14th is the procedure day. His procedure will start (if everything is on time…which it never is at the hospital) at 6:30 AM….and last for 6.5 hours if all goes as planned.

Now for what the procedures will be: If you don’t quite understand it, it is okay…we are still trying to get a better understanding of what is going to happen.  I will try my best to put it in as much english as I can. The Interventional Radiologist (IR) is going to shot dye into Noah’s veins to see where the blood is going.  They will see this with an x-ray.  Once they see where the blood is going, they will go in and embolize the veins. (Stop the blood flow from going into veins that shouldn’t be receiving blood.) so that all the blood will go to his heart. Noah has two AVMs in his body.  One in his neck and one by his spine. (AVM stands for Arteriovenous Malformation. An AVM is a tangle of abnormal and poorly formed blood vessels (arteries and veins). They have a higher rate of bleeding than normal vessels. AVMs can occur anywhere in the body.) This will hopefully make the AVMs go away or at least stop the blood from going there.  The next procedure will be taking the extra veins out of Noah’s legs.  He has too many veins in his legs and they are dilated so they need to be removed.  This will all be done non invasive which is great because Noah doesn’t need to be opened up with surgery.  After these procedures Noah will stay in the hospital for the next 24-48 hrs to be monitored and giving medicine for the pain.  From what the doctor has told us, Noah will be in a lot of pain when he wakes up because of all the poking and prodding that the doctors will do.  If Noah is doing well after that time, we are able to be discharged from the hospital but will have to stay in Boston nearby in case something happens.  We will be in Boston (if all goes as planned) for about a week total.  It will be a busy February for us. Noah was suppose to have hand surgery sometime in January or February of next year at CHOP (Philadelphia) but we will have to postpone that for sometime in the summer because of the AVMs Noah has in his body.  These take priority because they are a lot more serious and worrisome. We wil meet with Noah’s Hand Doctor December 24th in Philly to discuss this further. (Our prayer is that Noah’;s hands havent grown too much since our last visit because we don’t want to miss the window of stopping the growth.)

PHEW…so yeah that is what is going on right now in the Hanko world.  Lots of things for the coming new year…lots of scary things….lots of doctor appointments and travel. This past year has been a nice break from major doctor visits and Noah has been doing so well.  He is loving preschool and riding the bus.  He had a HULK birthday party with his friends which was a blast.  Noah loves to sing and dance and he is just such a funny happy boy.  We are so thankful to God for the good health Noah has had so far and we continue to pray for health as we look at these giants in the future.

Ethan and Silas are also doing well.  Ethan loves school and is learning so much.  He can write his name and loves to color and draw.  He has made lots of new friends at school and enjoys telling us all about them.  Ethan is really excited for Christmas and spending it in NJ with Omie, Tedo and the rest of our family.

Silas is growing so much…he is almost 10 months old.  He sits up and is starting to crawl.  He loves to eat baby food and watch his brothers play.  Silas loves playing with his toys and listening to his brothers sing.

We are so thankful for you all and your continued prayers for our family.  We will try to update more in the coming New Year to keep you all updated.  Please pray that we all stay healthy and that Noah will be able to get his procedure in February.  Please also pray for safe travel as we travel up to New Jersey and Boston.  We wanted to wish you all a very Merry Christmas and a HAPPY NEW YEAR!

 

Boston Bound

Tomorrow we head to Boston Childrens Hospital with Noah. We are scheduled to see about 8 doctors on Friday. All of these doctors are on the Vascular Malformation Team….so they are the experts when it come to CLOVES. We having many different emotions going on inside…excitement that we will finally meet this team that has so much experience and knowledge. Nervous and scared about what they will find or tell us about Noah. Fear of the unknown. Worried that we may not get the answers we want…we are not really sure how to feel…but we are thankful we can go! Thankful for the support of those who made it possible for us to travel to Boston via airplane and stay at a hotel. Thankful for the prayers that constantly surround us and give us the peace we need to face our biggest fears with Noah. We will keep you all updated once we meet the doctors. Our crazy busy day starts Friday at 8:30 am so please pray for us that day…especially Noah because its so much on him. We again thank you for all the love, prayers and support. God is good and we are so thankful He is with us every step of this journey.

 

 

 

 

Fear is a liar!

“Fear, he is a liar

He will take your breath

Stop you in your steps

Fear he is a liar

He will rob your rest

Steal your happiness

Cast your fear in the fire

Cause fear he is a liar!”

I heard this song on the radio today while cleaning the kitchen. Such a good reminder to me as we deal with some stuff with Noah. It had been an exciting morning of getting Noah ready for school. It was his first day of preschool at our County’s public school. Despite the excitement I was and have been feeling fear. The chorus of this song is so true for me right now…it came on at just the right time as my mind was racing through the fear of what is going on in Noah’s body…the fear of not having control of his health issues….the fear that something horrible is going to happen.

We found out on Friday that Noah has some issues going on in his body that we need to get checked out up at Boston Children’s Hospital. (the exact details are confusing and hard to understand so I will leave out those details until we know for sure what is going on and have a better understanding of these things) We will be flying to Boston the week of September 21st to visit the VAC clinic (Vascular Malformation Center) we are scared, nervous, and anxious to go but we know that we don’t go alone. Andrew reminded me last night that God has always made it very clear to us when Noah needs help and when we need to take him in to get help…God has always guided us along this entire journey of Noah’s life. We take such great comfort in this and know God is in control!! We also clinge to Pslam 91 as we wait to go up to Boston knowing again that God is taking care of Noah. We appreciate all the prayers and support we have from you all! We will update you with more info as we figure it out. Please just pray that Noah stays healthy while we wait to go to Boston. That God would calm my fears and I will be able to focus on Him and NOT the lies

Noah had a great first day of preschool. He loved his teacher and aides…and made some new friends. It was such a joy to pick him up and see him so happy and excited. God is good and we are thankful!!!

Will update you all again soon. 💚💚