Cochlear Implant Surgery is on the Horizon!

It’s been a busy but fun couple months for our family. We have had the opportunity to go on a couple mini vacations as a family. We visited Great Wolf Lodge for the first time and had a blast! That place is a MUST for families with children. Austin conquered his fear of water slides and Wyatt enjoyed all the splashing as well. We then spent the long weekend at Hood Canal in the cabin I have been going to since I was a little girl. We enjoyed yummy seafood, lots of fishing, crab searching and best of all…we spent the whole time with family and got to meet Seraphina. Seraphina is my cousin’s adorable little girl born 4 days after Wyatt. She had a great effect on Wyatt. The two of them played and laughed and interacted so well. She is the fastest crawler I’ve ever seen. Her crazy crawling skills rubbed off on Wyatt and ever since we got back, he’s been getting up on all fours and trying so hard to figure it out for himself. He can now pull up to standing and he is quite proud of his newest trick. He is fearless. And he works HARD. I admire that about him. He never gives up and he keeps pushing himself EVERY day. He is constantly amazing me with new things he is learning. God gave us an amazing little boy. 

He has also learned to wave, sign for “more” and drumroll please……he says dada and mama!! If you think about that, it’s more than awesome. He didn’t even hear until 4 months when he received his first set of hearing aids. So his hearing age is only 6 1/2 months. On top of that, his hearing is far from perfect. We are not what he can actually hear, but we do know that he can’t hear all speech sounds. It must be strange. But he makes great use of the hearing he does have. 

Wyatt continues with weekly occupational and speech therapy with the most gifted teachers that are a perfect fit for him. They have become a part of our family. We will forever be grateful for the impact they are having in Wyatt’s life. Three weeks ago, Wyatt took his last dose of antiviral medication. I think I did a happy dance and then reality hit. What is going to happen? How is he feeling? Is that ugly CMV virus going to do more damage to his perfect little body? Those questions will not be answered for a very long time, at least not until age 5 when we are sort of in the clear. The antivirals purpose was to drop his CMV levels as low as possible but he can’t be on them forever. Since he acquired the virus in utero, his body did not recognize it as something foreign. The antivirals trick the body to forget about the virus for an extended period of time. Then you stop the medicine and his body should view the virus as something attacking him and his immune system is supposed to kick in and fight it off for himself. Scary! We met with infectious disease today to recheck levels and see how kidney and liver function are doing. We get results on Monday. His CMV levels are expected to be at their highest after stopping the medication for two to three weeks. We are praying that this number is low. But we are happy to be moving forward in this part of his health journey. My prayer has always been that God would protect him from any more damaging effects and that Wyatt will ‘wow’ his doctors. 

Our little warrior has had more hearing tests recently. His hearing in his left ear (his “good” ear) has progressed to severe to profound hearing loss now. The progression of hearing loss was while on his antivirals so you can imagine what will happen while off of them. We expect him to lose all hearing unless God chooses to heal him. Meanwhile, we have completed all steps of the cochlear implant candidacy program and he has been approved for cochlear implants in both ears! And we have a date and it’s rapidly approaching! June 10th is the day! His surgery will just be on his right ear that day and a second surgery will be schedule a few months after that for the other ear. Can you believe that? That is less than 2 weeks!! We are so very excited to get him access to sound but also worried and scared and all the emotions that go along with it. It is major surgery. They will make an incision behind his ear and drill through his skull. Yipes! Please pray for the anesthesia team, the surgeon Dr. Sie (which might I add is the best surgeon you can get for this surgery) and for Wyatt to have strength and recover well. If things weren’t busy enough, they are only going to get more busy and crazy in the Meeuwse house. 🙂 Following surgery, there is a series of appointments upon activation of his implant which is on June 30th. Please pray for our family to find a new normal and balance of life through all this. Please pray for Wyatt’s progress in learning how to hear in a whole new way and that we all can be a learning tool for him every minute of every day. And let’s not forget to pray for big brother Austin. He is going to be one of my biggest helpers in Wyatt’s progress. He has been a patient and understanding boy through all of this but I do know it is hard on him as well. 

We can’t express enough how thankful we are for your prayers. We are thankful for the help we have received with Austin during all the appointments, the dinners cooked for us, friends helping with cleaning and meal prepping for the big day ahead and for financial support as well. This past year has been a journey. His grace is evident everywhere we turn and just when discouragement starts to creep in, God gifts us with new milestones by Wyatt and encouragement from family and friends. God’s teaching us daily to rely upon Him, to be ever so patient and to trust Him that Wyatt is being well taken care of by our Heavenly Father. 

Next time you hear from us, Wyatt will have a new ear! 🙂 Wow. That is crazy to think that we are finally here. 

We truly love you all and thank you from the bottom of our hearts for your support!

2014 – Wyatt Update

Hi All!

I hope you haven’t forgotten about us. 🙂 We have many new updates on our little man Wy Wy. So here it goes…

Since January, Wyatt has had visits to Children’s Hospital almost every week for one reason or another. Everytime I walk into that hospital, I am reminded of how blessed we are to have such a healthy baby boy. There are so many precious boys and girls that I see there that are facing some BIG challenges. Being the talker that I am, I have met many wonderful families that were gifted with these children. A gift? Yes, a gift. Since the big day we found out about Wyatt’s hearing loss, God has taught me ALOT. There is no other way to look at this news than in a positive light. God has gifted our family with Wyatt. He has entrusted Brad and I to parent him and for Austin to be his brother and best friend.  This is truly an honor! I pray that I can do my job well for Him!

As for CMV, Wyatt is being monitored and is still on his antivirals. Only 1 month left of it! We can’t wait! Although he is on the smaller side, he is growing at a normal rate along his growth curve, head included. The head is an important one to watch with congenital CMV kids. His CMV levels are down to 40 and his other blood counts are within normal range (although teetering on the borderline for some). We are thankful for these results.

Here is when Wyatt had his CT scan of his ears. They attempted the test without anesthesia and he did wonderfully. No anesthesia was a welcomed surprise. The anatomy of his ears are normal. The only damage to his ears are the hair cells which is what the doctor had expected to see with Wyatt’s case.

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He then had an aided and unaided hearing test. This is him in the sound booth, looking like a mini Shrek. 🙂 He was a little young for this so they will retest him the end of this month.

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Wyatt has been evaluated for his gross and fine motor skills and started weekly at home occupational therapy in February. His teacher is wonderful. I look forward to these lessons every week. They are fun and I learn new things that I can work with on Wyatt each time.

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He sports his new little SPIO suit every day which is like a spandex onesie. It gives him trunk support to help him last longer in positions that would tire him out pretty quickly and in the end it will help him build up core strength faster. He wears it all waking hours and he has made huge strides in physical strength since then. As you can see, Wyatt is not a fan of it. Haha!

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He also continues with weekly  home speech therapy lessons. It does seem that the tasks for him are piling up and becoming a bit overwhelming though. I would appreciate prayer for how to balance all the “to do’s” for him along with managing life…having time with God, giving Austin the attention he needs, being a good wife, cooking, cleaning, and having some time for myself. It’s hard. Brad’s job just seems to get busier and busier which is such a blessing for our family that he is able to support us and I can stay at home.  Pray for strength and wisdom for Brad to be able to grow the business and take needed time for family life.

So here’s the fun part…we are nearly done with the cochlear implant candidacy program! At the end of April, Wyatt has another aided hearing test and we meet with his surgeon, Dr. Sie. We should be able to schedule surgery that day. He has to finish his antivirals which will be done on May 7th. Then he will get a couple weeks to get all his blood counts back up to normal. Our hope is that he can get his first implant mid to end of May! Can you believe the day is FINALLY approaching? We are really looking forward to getting his 1st implant and pray pray pray there are no bumps in the road (unless God chooses to heal our little man) before surgery. It is still unknown on whether Wyatt will be recommended one or two implants. A big hurdle we are going to be dealing with is insurance. Please pray that the provider will approve coverage for implants prior to age 1. The picture below is what Wyatt will be sporting here sooner than we realize. It kind of scares me and makes me sad but he will be able to HEAR! He will hear in an entirely different way than we do but he will hear at the same decibel level as us…Wyatt will be able hear leaves rustling in the trees, waves in the ocean, raindrops on the roof, birds! 🙂 Thank you for modern medicine and all those that have worked so hard on this technology. We feel blessed that we have this option.

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I was surprised in the mail with the most thoughtful gift from someone who has been such a support to me over the years. She gave me a beautiful leather journal to jot down my thoughts, prayers, etc through this process. It could not have arrived at a more perfect time as life was completely overwhelming me. I have an amazing group of friends and family that consistently send me Bible verses throughout EVERY week. In this journal, I have begun to write down these verses and my struggles. This has been a real encouragement to me. Here are a couple of them…

Be still and know that I am God. I will be exalted among the nations. I will be exalted in the earth!  – Psalm 46:10

Praise the Lord. Give thanks to the Lord, for He is good; His love endures forever. – Psalm 106:1

God is good in ALL things. We must never forget that.

Blessings to you all!

Amy

2014 is a Big Year for Our Family

It’s been a long time since our last post. Things slowed down a bit for us during the holidays which was a welcome break for our family. In the last month, there has been many more doctor visits which I’m beginning to see that this will be our norm for a while. Mid December Wyatt had another BAER hearing test to confirm his last results were correct and to check if his hearing loss has progressed as this is common with CMV. Results were identical to the last test. This was wonderful news that the virus had not worsened his hearing loss. Our older son Austin also had a hearing test done which was quite interesting to watch how they do it for a 2 1/2 year old that can’t sit still for more than 5 minutes. 🙂 He passed with flying colors. Wyatt also outgrew his first set of ear molds already and is onto his 2nd set….almost 3rd. Who knew ears grew so fast??

As for his CMV…he’s been getting labs done every  other week along with visits to infectious disease to carefully monitor his kidney and liver function, platelets, CMV, etc. His last labs were drawn on Thursday and we received results Friday night. His CMV levels are down to 50!!! PRAISE JESUS!!!! This is the lowest the labs test can detect of the virus. It will not go to undetectable. I learned this new piece of information at his last appointment. Unfortunately, since he was born with CMV, Wyatt may live with it the rest of his life. It may never go dormant like it does for all of us. Since CMV is so rare, they cannot say for sure how this could affect him over his life as few studies have been done. But we are still praising God for the absolute best results we could ask for. We will just take one appointment at a time and give this to God. He’s taken care of everything so far. His doctor also checked his eyes, head circumference’s since Wyatt’s birth, etc and did not find anything of concern. We can’t be sure until time passes but it appears that the only damage CMV has done is to Wyatt’s hearing. He has 4 months left of his med’s now! Wyatt loves his medicine now. He tries to grab the syringe and shove it in his mouth. What a little helper!

He will see a neurodevelopmental doctor as we do have concerns about his physical development and want to cover all our bases.  However, we could just be worried and over cautious parents as we have been instructed to be with Wyatt and everything could be just fine. We will also have him evaluated by early intervention for possible physical therapy. Wyatt is physically very strong, much stronger than we ever remember Austin being. Our concern is that he does not enjoy being on his stomach. He’s fantastic at rolling from tummy to back but has absolutely no desire to do the opposite nor be in a sitting position.

This week we start the cochlear implant candidacy program! We are SO excited about this! This week’s appointment is an intro into what our family will face in the very near future and how it will affect ALL of us. We honestly don’t know all the details of what we will go over but we are happy to finally be starting this big step. Cochlear implants are AMAZING. We have met a few people with the implants are were knocked off our socks at how natural their speech was and saw how they were just kids living life like all kids do. That is what we want for Wyatt. To have a normal childhood and to be able to enjoy all things that kids do. Sure, things won’t be so simple and easy for him. He will have to work harder for it, but that’s ok. He’s an amazing, happy, content and SWEET little boy. God knew just what he was doing when he made him. We are blessed beyond measure to parent our sweet Wyattt!

So here’s how you can pray….

1.  Pray against any illnesses that Wyatt could get.  He still has a long way to go on the anti viral meds and there are quite a few side affects including reduced immune system function.

2.  Pray for a miracle to happen and Wyatt would have his ears healed.

3.  Pray for wisdom for us as parents as we have many big decisions to make with cochlear candidacy that will impact Wyatt’s life forever.

4.  Praise God for the wonderful miracles that have already been done in Wyatt’s life.  He is an amazing God!

Antivirals are Working!

Praise God from whom all blessings flow!

Wyatt has been on his antiviral medication for 3 1/2 weeks now. His little body has reacted well to it and he has not experienced any side effects from what we can tell. He has been getting weekly labs. His doctor is monitoring him closely to make sure his white blood cell count does not drop too low, check the CMV levels in his blood to see how well the medication is working, and to monitor weight changes which would mean higher doses of his meds. Here is the most amazing news…his CMV levels were 3,162 on November 8th. This was right before his started the antivirals. That is a crazy high levels of CMV.  His November 21st labs revealed the CMV levels dropped down to 398! YUP! ONLY 398! I had to have the nurse repeat the results to me because I thought I had heard her incorrectly.  What a blessing his body is reacting well and the medication working! We believe God is really watching out for Wyatt and is taking  excellent care of him. The goal is to get CMV to zero by week 6 of being on antivirals. He will continue to stay on the medication for 6 months as studies  show that this prevents flare ups and protects the brain from the continued damage of CMV. On top of all of this, his enlarged spleen has gone down in size as well!

We start early intervention with Wyatt next week.  Early intervention is  a process of learning how to communicate with Wyatt best with his hearing loss.  We are meeting his teacher this week. We chose the Listen and Talk program and are very excited to get started.

We are also set up with appointments for the Hearing Loss Clinic and Cochlear Implant candidacy program. These will entail MANY more appointments with specialists but we are looking forward to seeing if Wyatt is a good candidate for the implants.

Please continue to pray for Wyatt.   We are very encouraged to see God’s mighty hand at work in our family.  He is at work because of so many people praying for us.  God is a good God always and this process with Wyatt is a tangible way to see that God is real.  Here are some items to pray for:

1.  That the antiviral medications will continue to do their job and stop the virus dead in its tracks.

2.  That he will not experience any of the side affects of CMV.

3.  That the cochlear implant candidacy will go well.

4.  For wisdom for us as parents to make the right decisions and choices as these will affect Wyatt’s life forever.

Brad, Amy, Austin, and Wyatt

 

Doctor Appointments

We have lots of updates for Wyatt this week.

On Monday he had a brain MRI to see if the CMV had affected it.  In order to complete the MRI our little guy had to go under anesthesia. He was the cutest little patient I’ve ever seen in his miniature hospital gown.  the MRI took just over an hour and he did great under anesthesia.  Monday was the LONGEST day and night ever!  We received the most wonderful news the next day. God protected our sweet boy and his MRI results came back all normal! What a blessing and a HUGE miracle! The fact that his brain is not showing any inflammation after having this virus in his system for so long is truly a miracle! We felt a huge weight lifted after receiving the results. This test was the one we were most worried about. The results mean that there are no brain abnormalities and it is growing like it’s supposed to. However, what the MRI does not show is if CMV has caused any neurodevelopment problems. CMV could be in the fluids surrounding the brain. Only time will tell if he will face any neurodevelopment problems as he grows and physical milestones are reached or not.

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On Tuesday, Wyatt saw an opthamologist to see if CMV had attacked his eyes. When we arrived at the office, we found that the power was out.  Seems like God is really teaching us patience through this ordeal as well.  So, we ran some errands until the power came on and then went back to the office to finish up the appointment.  Praise Jesus that there were no cataracts and his macula and optic nerve were all normal. He will be reevaluated every 3 months as CMV can cause flare ups. Miracle after miracle….God’s hand has covered Wyatt completely.  Thanks for all the prayers!

Friday morning we saw an infectious disease doctor to see if Wyatt should/could be on antivirals to stop CMV from continuing to attack Wyatt’s body. We met with two doctors. They were amazing and so knowledgable. They answered nearly all our questions before we even got a chance to ask them. They highly recommended that Wyatt start the antivirals right away. The levels of CMV in his blood were at high levels. The objective of the antivirals  is to stop the progression of his hearing loss, protect his eyes from losing any eyesight, and protect his brain from neurological damage. There was no doubt in the doctor’s minds, nor in ours, to start that day on the meds. Wyatt will have to take them twice a day for the next 6 months. Yup…6 months! Unfortunately there are side effects. His red blood cell and white blood cell count will decrease as well as bone marrow function. Thus, his immune system will be weaker as well. They will monitor him closely to see how his body handles the meds and will see him every 2 weeks along with new labs done at each visit.

Blooddraw

Off we went to get Wyatt’s blood drawn and picked up his first bottle of the medication. We walked to the parking lot and gave him his first dose. We are ready to stomp this nasty virus!

So far, Wyatt has been doing okay on it. He had a slight fever the first day and it makes his tummy a little upset but he has been such a good sport through it all.

Romans 12:12 “Rejoice in hope, be patient in tribulation, be constant in prayer.”

Thank you all for your thoughts, prayers, and kind words.

 

Next Week

We are sure those of you following Wyatt’s story are wondering…did he get the appointment with infectious disease yesterday? Unfortunately he did not. His doctor and nurse tried everything they could to get him in somewhere yesterday. As his mom, I did to. I literally begged the doctor on the phone to squeeze him in and told him my heart. This whole process is so humbling. Wyatt’s doctor was able to get him in with Swedish infectious disease on Monday BUT the doctor there did say that Children’s hospital has done much more research, has better resources, and will give better treatment than at Swedish. At Swedish, they usually do not give the anti viral medication past 4 months of age.  He said to keep our appointment on Friday, the 7th, at Children’s. I am so thankful for the doctor’s honesty.

We will face some very big decisions at our next appointment. The antiviral meds have some big risks.  Please pray for God’s clear direction on what is best for Wyatt and his health.

We have a BIG week next week. Monday Wyatt gets an MRI of his brain. He will be going under anesthesia. They will be checking to see if any parts of his brain have been damaged by CMV. This is a scary one for us. Please pray for good results and normal brain development. Please also pray for peace for us as parents as we wait for the results and for God’s hand over Wyatt as he goes under anesthesia.

Tuesday Wyatt sees an opthamologist to get his eyes checked.

Friday is his Infectious Disease appointment to see if anti viral meds will be helpful.

 

Psalms 34:1-3

I will bless the Lord at all times; his praise shall continually be in my mouth.

My soul makes its boast in the Lord; let the humble hear and be glad.

Oh, magnify the Lord with me, and let us exalt his name together!

 

Brad, Amy, Austin, and Wyatt

 

Hearing Aids & Test Results

Today was a BIG day. Wyatt got hearing aids today! His hearing aids came in early on Monday (they weren’t supposed to arrive until November 7th) and there was a cancellation with audiology for today. This is unusual for this department but I think God opened that up just for Wyatt. 🙂 It was super exciting for Brad and I. We got it all on video too.  Wyatt definitely responded to the hearing aids so we know he is getting sound!! When they first turned on, his eyes just got really big. The best part was when he heard his own voice. He thought it was super cool! His voice all of sudden became a little lower and louder. It was amazing. WHAT A GIFT! I never really understood what people with hearing aids go through until now.  God is sure opening our eyes to many new doors and opening our hearts at the same time.  And I must mention he looks adorable in them!

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We also got results back and Wyatt tested positive for CMV. We are thankful it’s the better of the two and also thankful that the hearing loss is not genetic. We don’t want our little ones to have to worry about that when they get married and have kids one day. Thank you all for your prayers. However, Wyatt is not in the clear. The virus attacked him when I was pregnant. It’s extremely dangerous only during pregnancy and would appear as the common cold to anyone else. It is the cause of the hearing loss, enlarged spleen, etc. But there is also concern for his eyes/eyesight and brain function.

So where do we go from here? Wyatt will be getting an MRI of the brain on Monday. He will be going under anesthesia and as his momma this is a little scary but I know he will be in good hands at Children’s. He also needs to see an opthamologist to see if there has been any damage to his eyes. There is also a possibility that antiviral med’s via IV will help stop this virus from doing any more damage….i.e. his hearing loss could get worse than it already is. This is where we need lots of prayer and a miracle from God. He needs to get in to see an infectious disease doctor at Children’s TOMORROW. They only do this sort of thing on Friday’s so if they can’t squeeze him in tomorrow, we have to wait a whole week. And TIME IS OF THE ESSENCE right now that he gets on the med’s ASAP.

Psalm 34: 17-19

“When the righteous cry for help, the Lord hears
and delivers them out of all their troubles.
The Lord is near to the brokenhearted
and saves the crushed in spirit.

Many are the afflictions of the righteous,

    but the Lord delivers him out of them all.”

Prayer Requests

1. Get in to see an infectious disease doctor TOMORROW

2. That God would cover Wyatt’s body and protect him from further damage of the virus….protect his eyes, his brain and his hearing loss from becoming worse.

3. That Brad and I would entrust Wyatt to God and fully lean on our Heavenly Father to take great care of Wyatt and protect his little body.

4. Prayer for HEALING!! We believe God can heal Wyatt in an instant! Please never forget to pray this too.