Rollin' Along

All is well in Arnytown.  Will is healthy and happy.  He is just rolling along.  Rolling is Will's primary mode of transportation.  When he wants to go somewhere - like across the room, he rolls and rolls and rolls.  A boy has got to do what a boy has got to do to get what he "needs".   Thanks for your continued prayers.  Please continue to pray for Will as he works in therapy and continues to work on developing age appropriate skills.

Smiles!

Will is just full of smiles and giggles!  The new medicine has made a huge difference.  The doctors think that the stroke he had following his open heart surgery damaged the part of the brain that told his stomach to empty.  So, since his stomach was not emptying properly, the only place left for the contents to go was up and out!  This new medicine helps his stomach to empty properly and what a difference! 

Running for Ronald

Anyone who has followed Will's journey over the last year and a half knows how important the Ronald McDonald House is to our family.  Ronald McDonald House has given us so much that we wanted to try to give just a little bit back.  This year, Aunt Wendy (that's me) has committed to running the Chicago Marathon in honor of Will to support the Ronald McDonald House.  If you would like to donate to this incredible organization, see the link below.  All of the donations go directly to Ronald McDonald House and are tax deductible.  Thank you!

Wendy Mitchell Fundraising Page - 2012 Chicago Marathon - General Donation

Home Sweet Home

Will is back home. So far, the new medicine seems to be making quite a difference. Praying this takes care of things for now.

Update

The doctors at Bronson are trying to treat Will with some new medicine. So far, it seems to be helping. A hernia was seen on the upper GI at the site of the nissen procedure that was done a year ago, but the doctors do not feel it is significant enough to be addressed surgically. Will also had a double ear infection which was the likely cause of his fever. He will be seeing an ENT doctor in the near future to discuss the possibility of tubes. If all continues to go well and this new medicine seems to do the trick, Will should be home tomorrow.

Thanks for all your prayers!

Rough Time

Will is back at Bronson. He is not able to keep anything down and is running a fever. The GI Dr. wants Will admitted so they can try to figure out what is going on. Please keep Will and his family in your prayers. Pray for wisdom for the Doctors. Thanks!

Doin' Good and Some Exciting News!

Will is home and doing pretty good. He is recovering from all his respiratory junk but still is not eating any food by mouth. He is getting his nutrition and fluids through his G-tube, but he has not had any other food since he got sick because what went down did come up! So, hopefully, he will be able to get back to a normal feeding routine soon.

And for the exciting news - Nana is planning to take the whole family to Disney World next year! So, Nana, kids, inlaws, outlaws and any other stragglers we pick up along the way are looking forward to some quality time with Mickey next year. The cousins are very excited about taking the "little guys" on a Disney adventure. We are all praying Will stays healthy and continues to get stronger.

Home and Back Again

Well, Will has been home and now is back at Bronson. Connie and Al picked Nana up at the airport on Saturday in Grand Rapids and had to go straight from there to Bronson with Will. He is having some respiratory problems and is just a sick 'lil baby. He is still at Bronson and will be for at least a few more days. They are still waiting on RSV test results. Will is getting fluids and regular breathing treatments as well as antibiotics for a double ear infection. Today is a pretty rough day. The doctor did tell them that if it is RSV, the 4th or 5th day is the worst. So, he seems to be following that pattern. He is also having trouble keeping his feeds down. Since he still has a g-tube, they will start slow, continuous feeds and see if that helps him to keep the food down.

So, welcome home Nana! So glad you are here to help out!

Just Hangin' Out

Will is just hanging out at Bronson. So far, the lab work has been good. They are still waiting on a few more tests, but nothing more to report at this time.

Poor 'Lil Guy!

Well, Will is on his way to Bronson Hospital in Kalamazoo. He has been fighting a stomach bug of some sort for the last 5 days and just can't seem to get rid of it. So, his pediatrician sent him to the ER at Lakeview Hospital in Paw Paw and the ER at Lakeview has decided to send him on to Bronson. Right now, Will is waiting for his ride to Bronson. (He had an IV started at Lakeview and because of the IV, they have to transport him by ambulance). So, that is all I know at this time. Hopefully, once he gets to Bronson and has some preliminary evaluations, blood work and tests, we will know more and can post an update at that time.

God is Sooooooo Good!

The 'lil man is finished with his procedure and the results are excellent! What they saw on the echo that they initially thought was an aneurism was just a shadow. During the cath procedure they were able to take some measurements of the aorta and the results were better than what he measured back in May right after his angioplasty. That means that as Will is growing, his aorta is growing with him. There is still a gradient difference, but the doctors said he could have that the rest of his life and is not a cause for any concern at this point. They did not do an angioplasty during the procedure since they saw no reason to. We are so very grateful for doctors that are thorough and caring! Will will be in recovery for a few more hours so they can monitor the entry sites on his leg and then he will be staying with Connie and Al overnight in Ann Arbor before they head home in the morning.

Thank you so much for all your prayers! We are in complete awe of God's goodness and love and so very thankful for all the love and support from each of you.

Heading back to Ann Arbor

The 'lil man packs up today and heads back to Ann Arbor. Will checks in to the cath lab tomorrow morning at 9am for his procedure. Please pray for protection over Will during the procedure. Pray for wisdom for the new doctors who will be working with Will. Pray for Connie and Al that they will have peace during the procedure and also discernment in the decisions that lie ahead.

Thanking God for each one of you! There are only one set of footprints in the sand.

A Few More Details

Will's echo showed that blood is pooling in an area of the aorta. The doctor's initial thoughts are that it appears to be an aneurysm. However, further testing is needed to determine this. The procedure on Thursday will be a heart catheterization to confirm the presence of an aortic aneurysm. Based on the outcome of that test, decisions will be made as to what is the next step. If an aneurysm is present, they may elect to monitor it or it may be determined that treatment is needed in the near term. Treatment would likely involve placing a stint in the aorta. Will is also showing other signs of decreased blood flow. So, there is definitely something going on. Right now, the doctors need to determine exactly what that is. We really will not know much more than this until after the procedure on Thursday. Will is scheduled to report to the cath lab at U of M at 9am on Thursday. Will will be working with a new team of doctors. His regular cardiologist at U of M is moving to San Diego. The cardiologist that did Will's angioplasty in May, 2011, is on a 2 week rotation in the ICU so she is not available to do the procedure on Thursday. While we were hoping to work with Will's "regular" cardiology team, we are viewing this as an opportunity to get 2nd opinions from highly skilled pediatric cardiologists and surgeons.
Please pray with us for Will's health, wisdom for the new doctors that will be taking over Will's case and peace for Connie, Al and the girls. It is going to be a long week for all of them.

Did not get good news today

Today was a tough day at U of M. The cardiologist at U of M thinks that Will has an aneurysm on his aorta. Right now, they are planning to do surgery on Thursday, Jan 19. I am not sure of all the details and exactly what will be done during this surgery. We also think a second surgery will be needed to fully correct the aneurysm. Needless to say, Connie and Al were completely shocked by this news and are just now getting their thoughts collected so they can ask clarifying questions to better understand the situation and the treatment course the doctors are planning to pursue. We will be sure to update with more detailed information as soon as we better know what is going on.

Time for a Check-up

On Monday, Will has his one year check-up at U of M in Ann Arbor. It is so hard to believe it has been a year already! Will is doing really well. He is eating solid foods by mouth and he is continuing to get physical therapy and occupational therapy to help with some of the delays that are a result of his heart surgery. We'll have a more complete update for you after his appointments at U of M.

Such A Big Boy!

Can you believe how much that little stink has grown! Will is doing so well. He continues to get good reports from his Doctors, he is working on eating solid foods, and is sitting up all by himself! He will go back to U of M in January for a one year check-up with the cardiology team there.

We can't thank you enough for all your prayers and support over the past year. It has been difficult, humbling, frustrating, joyous and amazing all at the same time. We are truly thankful for the gift we have been given.

Good Check-Up

Will saw his cardiologist in Kalamazoo today and he got the thumbs up. He is doing great. At some point, Will will need to return to U of M to have a stint put in his aorta. They are hoping to get him to at least one year old before that is done. If he is at least a year old, they can put in a stint that will expand to adult size and it won't have to be replaced as he grows.
Will is also doing much better with food. He's eating cereal and veggies and liking it! Good news all the way around. Our God is so very good! Thanks for all your continued prayers for our 'lil man. He is pure joy!

Bad Aunt, Bad Aunt!

What can I say? I'm a bad aunt. No update in almost 2 months! Well, the fact is there just hasn't been much to say. The boy is a rock star! He's got the fan club, he's got the moves, and he can sing! All is good in the big city! Hopefully, we'll have some cute 'lil pictures to post soon.

Y'All Done Good!

Your prayers have definitely been heard and answered in a BIG way! The 'lil snotwad got excellent test results today. Not just good, but Excellent (yes, that is Excellent with a capital "E"). Will did very well with his sedated echo today and the results were far better than we expected. His aorta measured 5 and his blood pressure gradient was 35. The last test showed an aorta measurement of 2.5 and a gradient of 50. (10 is a normal aorta measurement at this age and you want the blood pressure gradient to be lower) The Doctor said the sedated test is the accurate test and we can basically throw out the previous test. During the previous test, Will was very wiggly and giggly which can cause inaccurate test results. That is why the cardiologist wanted a sedated test to verify if the previous numbers were correct. And, thankfully, they were NOT! The cardiologist in Kalamazoo is very happy with the test results and told Connie and Al that she doesn't need to see Will again for 4 to 6 weeks. And if the next visit is as good as this one, they can go even longer between visits. The cardiologist assured Connie and Al that Will's current condition is stable and he is not at risk of having a sudden re-narrowing of his aorta. If it does re-narrow, it will occur slowly over time and she will be able to detect that through regular monitoring. So, all in all, it has been a very good week. Will has gotten a clean bill of health from all his Doctors and can just get back to being a normal little baby guy. (well, not so little. He's clocking in at over 20 lbs.) Thanks so much for your prayers. The 'lil man was cleared for take-off as he will be going on his first plane trip very soon! He'll be sportin' cowboy boots and a Stetson in no time!

Another test on Thursday

The cardiologist at U of M reviewed Will's last heart test and has decided that in her opinion nothing needs to be done at this time. However, that concerns Will's cardiologist in Kalamazoo and the rest of the family. So, the cardiologist in Kalamazoo wants to test Will again this week. The tests this week will be done while Will is sedated. The purpose in doing that is to hopefully rule out inaccurate test results due to Will being a very active 'lil guy. Please pray for accurate test results and agreement with all the Doctors involved. We are hoping that the tests this week will give us a clear direction as to what the next step should be - whether it be going back to U of M, seeking a second opinion or continuing to wait and doing regular testing to monitor Will. Pray for peace for Connie and Al as they seek guidance in what is best for Will.