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.

Changes

Well friends, the little man saw his cardiologist yesterday and the appointment didn't go as well as we were hoping. Tests showed that Will's aorta has narrowed again significantly and there is also more than a 50% difference between his upper and lower blood pressures. It appears that his aorta has narrowed to 2.5. 10 is normal. After his angioplasty in May, Will was at 7. So, we know that his situation must be addressed, but we aren't sure exactly what that will entail right now. Will's cardiologist in Kalamazoo is sending all his test results to U of M to be reviewed and we are expecting to hear from U of M early next week with their recommendations. So, it will be a weekend of uncertainty. The expectation is that once U of M sees the test results that they will want to evaluate Will as well. So, there may be a trip to Ann Arbor in the near future. In the mean time, please pray with us that the doctors evaluating Will's information will have good discernment and that Will will remain healthy.

Atta Boy!

Will is doing great! In fact, they have cancelled his scheduled stomach procedure. He hasn't thrown up in 2 weeks! He is laughin', smilin' and in general is a happy baby. He still tires easily and needs frequent snuggle rests to recharge. But, overall his health is good right now. Will goes back to his cardiologist next week for a check-up.

Thanks for your continued prayers! We're enjoying the good days and praying for many more!

Family Camper

Long time no update, huh? Well, that is good news because I've had nothin' to tell ya! The boy is growing and overall doing pretty well. His current stats are 19.5 lbs and 28.5 inches. Will continues to have some issues with digestion and respiratory infections. But, Connie and Al have gotten pretty good at knowing when something isn't quite as it should be and getting Will in to see his pediatrician before major problems develop. Will's heart tests show no changes. While he still has heart issues, they are not getting any worse at this time.

However, the biggest news that we have to report is that Will was a first time Family Camper at Gull Lake Ministries! The week got off to a rough start with a trip to the ER the second day and then another trip to the pediatricians office a day or two later. But once Will got a couple doses of antibiotics to treat his lung infection, he was one happy camper! He enjoyed lots of attention from cousins, in-laws, out-laws, rednecks, etc. and he told all kinds of stories to anyone that would listen.

And the last bit of news is that Will will be going to Bronson for an overnight on Wednesday. They will be doing some GI testing and it will be best for everyone if it is done inpatient. Please pray that Will tolerates the testing well and that the results will give the doctors a definitive answer as to what is the best way to proceed with treating Will.

Check-Up Update

Will saw his Doctor buddies today in Kalamazoo. The cardiologist is very pleased with his current status. His blood pressures have improved significantly since she saw him last and since he was at U of M. Your prayers are definitely being heard! As he grows (and the boy is growing!), his aorta may be growing also allowing for some better blood flow. We know there is still a major issue there that will have to be addressed. But, for now, we'll take it!

The other bit of news, unfortunately, not quite so good, is that Will needs to have his stomach procedure re-done. That is the funky little twist thing that helps to keep his food in his stomach where it belongs. He is vomiting quite a bit right now and some of that aspirates into his lungs which is contributing to his chronic respiratory and lung infection issues. So, we don't have a date yet, but it will likely be soon that Will makes a little trip to Spa Bronson to see his girlfriends (aka nurses) and gets a little twist to the stomach. There is actually a name for the procedure - it is called a Nissen or something like that. But, since most of my medical knowledge comes from reading fiction novels, I'm not quite sure of the spelling. This will probably entail a one or two day stay at the hospital and in the grand scheme of things, is a pretty minor issue.

Thanks for all your prayers, words of encouragement and all you do for the Arny family. We so appreciate all of you! In the not quite so accurate words of Bobby Flay - "...and for all you awesome prayer warriors out there, keep doing what you're doing and ask yourself, 'are you ready for a prayer down'?" Or something along those lines!

Happy to be Home

The 'lil man is just happy to be home. He squealed with delight when he got home and back to his own little world. Please continue to pray for Connie and Al as they are monitoring Will's health very closely. Pray that they will have good discernment in knowing when to seek further medical treatment for Will and the best course of action for the treatment.

Heading Home

What a week! What a roller coaster of emotions! Will and his entourage are on their way home. Most of the testing this week focused on his digestion issues. The tests did show some reflux problems that do need to be addressed. However, we aren't quite sure what the treatment is for that yet. The testing also indicated that Will has a lung infection and that is being treated with antibiotics. As of right now, the Doctors have decided to hold off on the heart surgery and try to allow him to get a little bit bigger before that is done. Will's regular cardiologist wanted the surgery to be done. However, the Doctors at U of M did not think he was bad enough yet even though his blood pressures indicated that he is within 10% of what U of M defines as "bad enough". His cardiologist was taking the approach that she didn't want to allow him to get "bad". But, the surgeons at U of M seem to focus on critical cases only that tend to be imminently life and death situations. It seems as if they sometimes lose sight of the quality of life issues and forget that these little one are people too who are trying to develop and grow and lead "normal" baby lives. While we are relieved that Will did not have to go through a major surgery, we are still concerned that many of his health issues are related to his reduced blood flow. Please pray for wisdom for the Doctors that they will use good judgment in their treatment decisions for Will. Pray that Will's health remains stable.

Cancelled

As of right now, Will's open heart surgery is cancelled. U of M wants further testing and all the doctors involved are not on the same page. So, limbo anyone?

Delay

Will's surgery has been delayed. The doctors at U of M want to do further testing. Unfortunately, we have many questions with very few answers right now. Please pray for little Will as he has to go through more testing. Pray for wisdom and discernment for the doctors as they review these tests and decide on the best way to proceed. Pray for patience for Connie and Al. This has been a very frustrating day for everyone.

Lucky Number 12

That is the room number at Ronnie's - room #12.

Off to D's

Ronald McDonald House, that is. Connie and Al have a room at the Ronald McDonald House. This is a huge answer to prayer. This gives them a place to stay across the street from the hospital as well as gives them direct access to the nurses caring for Will. Their address will be:
Arny Family
c/o Ronald McDonald House
1600 Washington Heights
Ann Arbor, MI 48104
We don't know the room number yet, but will let you know as soon as we have that.

Thanks so much for your prayers. It is going to be a long week, but we know our God is faithful and He is the Great Physician!

Family Day

Will has been enjoying some quality family time this week. Lots of planning and preparations are being made for Will's surgery and stay at U of M. Thank you so much to everyone who is helping with the girls!

Giggles!

While we (we being the adult type people) are all feeling very heavy hearts, the 'lil man is still just a gigglin' away. He's as happy, smiley and giggley as can be. Grateful for the smiles and giggles!

Tough Day

Today Will went back to the cardiologist in Kalamazoo for a check-up. The cardiologist was immediately concerned about Will. Further testing indicated that his aorta has already narrowed again quite significantly. The cardiologist immediately called U of M in Ann Arbor and they have already scheduled Will for surgery next Tuesday. Unfortunately, this time it will be another open heart surgery. This open heart surgery will be a bit more extensive than Will's first open heart surgery since they will be replacing the whole aortic arch rather than just the narrow section.

Needless to say, this is not the news we wanted today. We know that God is in complete control but it is still a really tough day! Thanks so much for all your prayers. Will checks in to U of M next Monday morning and is scheduled for surgery on Tuesday, June 14.

Follow-up Visit

Will had a follow-up appointment with his cardiologist in Kalamazoo yesterday. She is very pleased with how well Will is doing following his surgery last week. But, she will be monitoring him closely. So far, he has proved to be a bit of a challenging case. His case has presented as anything but "normal". So, the boy is writing his own book. Will's case has been so unusual that the cardiologist will be presenting it at a medical conference soon. When Will had his angioplasty last week, they were shocked at how severe the coarctation was. His EKG prior to surgery did not indicate at all that it was that severe. So, the doctors will have to rely more on signs and symptoms rather than test results to monitor him. Will has also started going to the "feed clinic" in Kalamazoo. Here, they will be doing occupational and physical therapy to teach him how to eat by mouth and swallow. Since he is still fed by g-tube, this is a whole new world for him. He did get a few tastes of cereal yesterday and seemed to like it. Part of his digestion issues could have been caused by reduced blood flow to that area. So, we are hoping that Will's recent angioplasty will also help his digestion issues by increasing the blood flow to that area.

Thanks for your continued prayers. This has been a very long road and the trip is far from over. We are enjoying the scenery along the way and learning to trust in God's unfailing love in a way that we never could have imagined.

Home!

Will had a rough night after surgery Wednesday night. Nana was a trooper and stayed with him all night. Because of his rough night, the doctors elected to keep him at the hospital a little longer than we originally anticipated so they could monitor him. But, by Wednesday afternoon, he was doing well and was released to go home. So, the Arny family is once again all home and back to "normal" (let us know when you figure out what that is!). Thanks for all your prayers! While they were not able to open up Will's aorta as much as was hoped, it should be enough to give him some time to grow and build up his strength before another procedure is needed.

All Done!

Will's surgeries are all done now! The narrowing of the aorta was worse than they anticipated, but the heart surgeon was able to open it up fairly well with the balloon procedure. They evaluate the effectiveness of the procedure by monitoring the blood pressure in the extremities and there was very good improvement. So, now they will continue to monitor Will over the next 6 to 12 months to see if any additional procedures will be needed.

Nana and CJ will be spending the night at the hospital to be close to Will. And then tomorrow morning, if all is good, they should all be heading back home.

Thank you so much for all the prayers! Your prayers have been such a comfort and encouragement to the Arny Family!

One Down

The lung procedure is complete. The pulmonologist was very happy with what she saw. Will does have a lung condition that will be treated similar to asthma. But, this condition is not related to the heart. So, now we wait for the results of the heart procedure.

Bid Day for a Lil' Man

Today is the day for our lil' man. Thanks so much for your continued prayers. Please pray that the heart procedure is successful and the lung scope will provide some answers. The power of all the prayers has been so evident over the last few days. Thank you, thank you!

Ready to Go!

Will sailed through all his tests today. He was his normal charming, flirtatious self and is set for his procedures tomorrow. Part of the lung procedure will include doing a biopsy of the fluid in his lungs to see if they can figure out where it is coming from. Then the balloon procedure will be done on his heart. In total, both procedures should take about 4 hours. Everything is still scheduled for 1pm. Pray people!

It's the Final Countdown....

Today, Will heads off to U of M. He checks in tomorrow morning at 9am for testing, labs and all the other essential pre-surgery stuff. Then on Wednesday, May 11, at 1pm he is scheduled for two procedures. The first is a scope of his lungs. They will be checking for any deformities or anything else that could be causing the breathing issues Will has. Then, he will have his heart procedure. This will be an angioplasty procedure where they go in through his leg and use a balloon to try to open up the part of the aorta that has narrowed again. If this does not work, another open heart surgery will be scheduled at a later date. So, you know what ya gotta do here - PRAY that the angioplasty is a huge success! Our God is BIG so get busy and get prayin'!

Waiting

Please pray for little Will as he awaits his next heart surgery. He seems to be struggling some as he breathes and is just really worn out. The Doctor that he saw yesterday thinks that his condition is OK, but we have seen a change and are concerned. We are ready to get him back to U of M and have his procedure done. Pray that if he needs to go sooner than his scheduled date of May 11 that God would clear the way to make that happen.

It's A Date

Will officially has a date with U of M. On May 11, he will have his heart catheter procedure. They will also be taking a peek at his bronchial tubes to see if they can find any reason for all the respiratory issues Will has been having. Will needs to be at U of M on May 10 for labs and prep work and then the actual surgical procedure will take place on the 11th. Please pray for peace for the family as they anticipate this next step and for wisdom and guidance for the Doctors that will be caring for Will.

So Here's The Deal

The boy is home (cue the collective cheering, doin' the wave, woot, woot, etc.). The doctors have officially diagnosed him as a little snot nose! He produces a lot of mucus. That mucus then builds up over time and causes lots of problems. So, he is now on meds to help dry up his secretions and he also has a suction machine that should help to keep the mucus cleared out. The other bit of news is that while Will was in the hospital, the cardiologist discovered that he will have to have another heart surgery (this is where we all let out a big "BOO!"). The coarctation (narrow part) of the aorta that was repaired during his open heart surgery in January has started to narrow again. This is due to the build up of scar tissue. So, at some point, Will will need to return to U of M and have a surgical procedure to open that area up again. It will actually be a heart catheter procedure where they go in through his leg and use a balloon to open the narrow area of the aorta. We don't know exactly when this procedure will need to take place. The cardiologist in Kalamazoo is in communication with the heart surgeons at U of M and they will decide when the procedure is needed. At first, we thought is would be soon, but now they are saying that it might not need to be done right away. So, we really don't know much! At the time Will had his open heart surgery, the Doctors did explain that there was a chance of this happening. However, it still stinks to be the statistic. So, all in all, things are going OK. Will does have some ongoing health challenges that he battles right now. He will continue to need some extra care until he either outgrows some of these issues or becomes big enough to learn how to manage some of them on his own.

Thanks so much for all your prayers. You have all been a constant source of strength and encouragement to our family!

Here We Go Again!

Our 'lil man is back at Bronson. The good news is that his heart Dr. has said that whatever is going on is not related to his heart. The bad news is that he's a sick little guy and they don't really know what is going on. Some tests have been ordered and right now we are waiting to see what those tests show. Please pray for wisdom for the Doctors that they will be able to quickly diagnose Will's issues and proceed with effective treatment.

Comin' Home

Will is on his way home. He has viral pneumonia and will continue with antibiotics and breathing treatments at home. So, after a short visit to Spa Bronson, he has smiled, giggled and charmed his way out of there. Please continue to pray for a quick recovery! Thanks for all your prayers!

Well, Darn It!

The boy is back in the hospital. This time pneumonia. Please pray that Will responds quickly to the meds and doesn't develop any other complications. But he still is darn cute!

Social Butterfly

Well, the 'lil man has become quite the socialite. He is often out and about shopping, visiting, cheering for his sisters at their events, etc. Will is doing wonderful. He's growing like a weed and is just a content easy going baby. He still does not like anything in his mouth, but we'll take the good health!

Headin' Home

Connie and Will should be headed home soon. Will has an influenza bug and can be treated at home for that. So, everything should hopefully be getting back to normal soon - if there is a normal anymore!

Back at Bronson

Will is still fighting the cold and general respiratory crud he has been dealing with for the last few weeks. This morning, he seemed to be getting worse, so Connie and Al took him back to Bronson. They are going to admit him and run some more tests. There is something in his chest xray but they are not sure if it is pneumonia or some fluid build-up from discontinuing the lasics. Hopefully, the blood work will give them a little bit better idea of what is going on. So, for now Will is at his home away from home - Bronson. But, it is better that he is there until they know for sure what is going on. Thanks for your prayers!

I'm A Big Boy Now!

Will is growing and gaining weight like crazy! He saw the neurologist and the cardiologist yesterday and both are very pleased. Will is now off all meds - nothing, nada! See ya Mr. Pharmacist! Please continue to pray for his physical therapy and occupational therapy as they try to work on sucking and swallowing. Will is being pretty stubborn on this issue. Guess we can blame Papa for that one, huh! (love you Dad, but you did teach us to be honest, right?) So, otherwise all is good in Arnyland.

Lookin' Good

Little man is now 12lbs 7oz. He is making up for lost time! Will did have an EEG this week. They will not get the results until next week. The Doctors continue to be happy with his progress. If the EEG is normal, Will should be able to stop the anti-seizure meds that he takes.

'Lil Snot Nose

Well, the boy has a cold. He woke up all stuffed up this morning. So, after a little road trip to see the Doctor and be sure everything was OK, he's chillin' at home. Please pray that Will is able to get over this quickly and it does not turn in to anything more serious.

It's A Great Day In The Neighborhood!

Will had his check-up in Kalamazoo yesterday with the GI surgeon. The surgeon was very pleased with Will's progress. He is gaining weight and for the most part is a happy 'lil guy. He is starting to suck on a pacifier (can I hear a collective "yes!"). That is the first step in his therapy process for learning to suck and swallow. Once he is comfortable with the pacifier, they will start putting a few drops of formula on the pacifier. Will's reflexive reaction when something is in his mouth is to try to push it out. Most of his first two months of life have been spent in hospitals and anytime he had something in his mouth it was usually because someone was trying to shove a tube down his throat. So, he will need time to overcome that response. Will meets with a physical therapist and occupational therapist regularly. It is normal for babies who have had heart surgery to have very weak upper body muscle strength. So, he will need to build his strength so that as he is learning to suck he will not tire so easily.

Thanks for continuing to pray for the Arny family as they adjust to Will's medical needs and establish a normal family routine.

We're Outta Here!

Time to blow this joint. On the road for home! Will has done excellent today. He is already tolerating the feedings that they planned to start in two weeks. While we are very grateful for everything Bronson has done, it is definitely time to move on! Look out Coloma.....we're baaaack!

Answered Prayers!

Just so y'all know, Will's surgery yesterday was a tremendous answer to prayer! Thanks so much to all of you who have been so faithfully praying! The Doctor said it was really a "fluke" that they found the pyloric stenosis during the surgery. We just know that fluke is a biblical term for "our God is good, really good". Had they not found that when they did, Will likely would have been in some big trouble by next week in spite of the G tube and stomach wrap being completed successfully. In hindsight, we can all see now that Will did have all the classic symptoms of pyloric stenosis. However, the Doctors were not even looking at that since they were looking at the GI issues as somehow being related to Will's heart surgery. Some of them may have been since he had so much going on at once. But, the pyloric stenosis was something altogether different.

Will is recovering at Bronson. They are working him up to normal feeding amounts and then are looking at a little road trip home in the next few days.

All Fixed Up!

The little man should be all fixed up now. Surgery went well although much longer than expected due to the extra things that had to be done. Please pray that Will's recovery continues to go smoothly.

Little Guy Update

Will is almost out of surgery. Here's the deal. During Will's surgery, they found a pyloric stenosis (inquiring minds can google that!). Basically, the opening from the stomach to the intestines was too small not allowing food to properly pass from the stomach to the intestines. That was fixed as well as the G tube put in and the stomach wrap procedure. So, the little guy had his flapper between his esophagus and stomach stuck open and the opening from the stomach to the intestines closed off. Guess where all the food was going?! It is amazing the he was able to even sustain his birth weight much less gain anything. Hopefully, the right openings will be open and the ones that should close will now close. This should allow Will to properly digest food and start to work on sucking and swallowing. Eating has been miserable for the little guy so now he can start to enjoy one of life's simple pleasures - good food!

Grow, Baby, Grow!

Will is finally gaining some weight. In addition to the GI bleeding, he has been unable to keep most of his food down. So, that means he has not gained much weight since birth. Well, several things have been done to help him keep more of his food down. Will is on a special prescription formula, his feedings are through an NG tube that goes through his nose direct to his stomach, the feedings are given very slowly (over 2 hrs. or so), he is on prescription antacids to help minimize the reflux and he is kept propped up at a 45 degree angle all the time. The test that was done last week showed without question that Will does need the stomach "wrap" procedure. This surgery will be done on Tuesday (not sure of time yet) when the G tube is put in. During the procedure they do some funky twist thing to the stomach to make the opening of the esophagus smaller. This combined with getting the NG tube out of there should allow the epiglottis to function more normally and close like it should keeping the food in the stomach where it belongs. Whewwww.....and once all that is done, Will's next big job is learning how to suck and swallow! Poor little guy has his work cut out for him. Most babies have the G tube until they are 6 to 12 months old. Let's pray that Will is a quick study and can get rid of that thing ahead of schedule!

Surgery scheduled

Will is scheduled for surgery next Tuesday. We know that he will get his G tube at that time, but are still waiting for additional test results to know what else may be done.

Happy Weekend Y'all!

So, here's the latest...

Will has been taken off the antibiotics that were started a few days ago. They were really upsetting his already fragile GI system. The Doctors have diagnosed him with colitis. We still aren't sure of what caused the colitis or the whys. They are giving him his formula very slowly now hoping that he will be able to keep more of it down. That means he is on a continuous feed which is not what they want for long term, but is what has to be done for now. They are also evaluating whether or not a stomach "wrap" procedure will need to be done. If I understand it correctly, the purpose of that is to make the esophagus smaller to help remedy the reflux and keep his food down. If that procedure is needed, it will be done at the same time the G tube procedure is done. We know that a G tube will be put in. The question is whether the stomach procedure will be done at the same time. Since both are surgery procedures that require anesthesia, if both are needed, it is best to do them at the same time. So, for now, the NG tube stays in until other decisions are made. Once the G tube is in place, Will will likely be sent home to start PT and OT to work on learning to suck and swallow. There is a window of opportunity after babies are born where they do suck and swallow on reflex. Due to Will's heart surgery, he was not able to feed during that time and that window was missed. So, for him, sucking and swallowing is a skill that will have to be taught. His little body is not able to accomplish that at this time. That can be a rather long and sometimes frustrating process. So, please continue to pray for Connie and Al. Will did so well with his heart surgery and the Arny family was so anxious to all be home together and establish a normal family life. This extra little complication has been difficult and frustrating to say the least. Pray for CJ and Lyndsey as they are adjusting to being apart from the parents quite a bit during this time.

Some Arny Goodness

Will is stable and doing fine at Bronson. But, other than that, we really don't know what is going on. The weekend shift of Doctors have some different ideas than the regular weekday Doctors so we're not too sure which direction we are going right now. Hopefully, tomorrow when the regular Doctors are back, we'll have a little bit better idea of what the plans are. So, stay tuned. We hope to have more information in the next day or two.

Nothing New or Exciting Goin' On

Well, Will and his entourage will be Bronson residents for another week. So far, all the tests really haven't shown much of anything. They did start Will on antibiotics in case some of the irritation spots in his colon were starting to get infected. The antibiotics seem to be helping. His bleeding seems to be a little less. The tests they have done for reflux have shown contradictory results. So, right now, everyone is just kind of hanging out trying to figure out what to do next. They will be putting in a G tube to help with the feeding. Will just isn't getting the hang of sucking and swallowing and having a tube down his throat is not helping with that at all. But, the surgery for that will not be for another week or so. Please keep praying for definitive answers. We know who has all the answers and it's pretty clear that HE is the only one that has any answers right now!

Bit of a Fever

Will is running a bit of a low grade fever. At this point, they are not treating it. If he is trying to fight something off, they want the fever to do its thing. We are not yet sure if that will effect the testing schedule for today. So, if you have the sniffles, coughs, sneezes, a rumbly in your tumbly or anything else of that nature - STAY AWAY! We love you, so appreciate your prayers, miss you and all that stuff, but we don't need your germs. Please continue to pray for wisdom for the doctors and rest for Connie and Al. Understandably, Connie and Al are starting to get pretty worn down and we don't want them to get sick either.

Can Good News Be Frustrating?

The good news is that so far Will's tests have all come back negative. They've ruled out the major stuff, but the frustration is that we still don't know any more than we did when he was admitted to Bronson. They still don't know what is causing the GI bleeding. But we know of several things that are not causing it! That is something, right? Very little testing is scheduled for today. Right now, it looks like Will is going to have a G tube put in on Tuesday of next week and he may be able to go home on Wednesday. All things subject to change!

Not Much Info Yet

So far, not much has showed in the testing. In fact most tests have come back negative. The endoscopy did show some irritation which is likely the source of the bleeding, but they aren't sure what is causing it yet. They are still working with the possibility that Will could be allergic to the proteins in the formula. However, since it takes 10 days for your body to be clear of an allergen, they won't be able to confirm that for some time. Yesterday, they did switch Will to a different formula that does seem to be helping. Testing is done for today, but more tests are scheduled for tomorrow.

Hangin' in Kzoo for a Few Days

Looks like the Arny clan will be staying at Bronson for at least a couple of days. Will had his swallow test this morning and it did show that he is having problems with swallowing. However, the NG tube may be contributing to this. So, if they take out the NG tube to work on swallowing, they will need to put in a G tube (direct in to his stomach) to be sure he gets the nutrition needed until they can work through the swallowing issue. Will is getting an upper GI now and will also be getting an endoscopy. They do know that there is some bleeding somewhere in his GI tract. They just need to find out where it is and what is causing it. The approach right now is to rule out all the major stuff and then work from there. It could come down to something as simple as needing a special formula that his body can handle. But, until they rule out the major stuff, that really isn't something they can address yet. And if you happen to be in Kalamazoo and want an Arny fix, you can find them at Bronson Children's Hospital East Pavilion Rm 318.

Mornin'

Just to start your morning out with a bit of sunshine! We'll post updates as we get more information from the Doctors today.

Time to Pray!

Will is being sent back to Bronson for some tests. He is having some GI trouble and the Doctor wants to be able to get all the tests done at one time and Bronson is the best place to have that done. All the specialists will be in one place and that will help expedite the whole process. Please pray that the tests will go well, the Doctors will have wisdom and the Arny family will have peace! Will's overall health is still good, but we do need to find the cause for these GI issues that he is having.

Tube Tales

Well, as you can see, Will is just an adorable 'lil guy who is lovin' his family. For the most part, he is doing very well at home. But, he is having some issues with eating. As long as he has his friend "Mr. Tube", he does pretty good. But, this week the Dr. wanted to take the tube out and see how Will did with eating on his own. Well, it didn't go so well. So, to prevent him from getting dehydrated, the tube had to go back in. On Tuesday, he is having tests to evaluate what is going on with this whole sucking and swallowing issue. Please pray that the tests would give the Dr. good information to work with so they can determine what is going on and find appropriate solutions so Will can eat and thrive on his own.

On the Grow!

The boy is tipping the scale at 10 pounds! Tomorrow he goes on a little road trip to see the cardiologist in Kalamazoo. Thanks for your continued prayers as the Arny Family is establishing a new normal in their home. Pray for good health so Will isn't exposed to all those lovely winter cooties that seem to circulate in abundance this time of year.

All is Good on the Homefront

Will is adjusting quite nicely to being home. The rest of the family...well, let's just say they now remember what it is like to have a newborn in the house! Will does still have a tube in his nose for supplemental feedings. He is still working on figuring out how to suck on his own. And since he is a very big boy and also needs extra calories to help facilitate healing from a major surgery, he gets supplemental nutrition in his tube. He still has to take some meds, but otherwise is just like any other newborn - a bit high maintenance and full of snuggles!

Sweetness!

Now, that is just pure sweetness! As you can see, Will has recovered remarkably well from his surgery. Once he got rid of that crazy vent he was off to the races!

Passed with Flying Colors

Will passed all his tests with flying colors. And is on his way HOME! Please pray for traveling safety as the Arny Family is on the road. More details on cutey pie Will later!

Day-O-Tests

Will was scheduled for several follow-up tests today. He had cardiology and neurology tests. These tests will help determine when Will can go home. CJ and Lyndsey have also arrived in Ann Arbor for the weekend. So, the Arny Family is all together - almost makes ya wanna break out in a rousing round of Kum By Yah doesn't it?! The girls were very happy to see their parents and their brother and will be a great help to Connie and Al. Will is starting to get the hang of the whole sucking thing so please continue to pray that he gets that down and doesn't have to go home with a feeding tube. Today they were also starting to fit Will for his carseat. They are using electrodes to help them determine where the seatbelt straps need to be placed to keep the straps from putting too much pressure on his incision. Man, so many things we have taken for granted that we will never take for granted again! Pray that Connie and Al are able to be attentive and alert for all the training they are receiving on how to care for Will at home.

Just a Regular Guy

Just so you can savor the cuteness!

Will is now in a regular hospital room. Since he isn't surrounded by nurses all the time, Connie and Al are finally getting to experience being the parent of a newborn - complete with sleepless nights! Connie and Al are able to be with Will all the time and provide most of his care. Connie and Al are also learning how to care for Will once he comes home. And, a rumor is going around that they could be home fairly soon!

Another Day, Another Milestone

Today's big news is that Will is able to take all his meds orally now. So, he is losing all his tubes except the feeding tube. They tried to give Will a bottle today and right now he is struggling a little bit with sucking. He did nurse a few times at Lakeland, but otherwise all his nutrition has come through tubes. So, he is having a bit of a hard time remembering what it was like to suck. But, they already have a therapist working with him and I'm sure he will be a sucking fool in no time. He's a big boy and likes his food so I'm sure he'll figure it out!

Just a good day!

Will continues to do very well. Today they took him off the cpap and he is now just using the oxygen prongs. This means that the little guy was able to be held most of the day by his mom and dad. Will is also getting breastmilk in his feeding tube. So, he is a happy camper today! Will is still in PICU mostly because they do not have any room for him in moderate care and his next move will be to a regular room. The medical staff wasn't quite ready for him to make that big of a move today. But as long as Will continues to progress as he has been, he will be in a regular room very soon. The neurologist is continuing to monitor Will, but does not have any major concerns at this point.

As a family we want to send a huge THANK YOU to Dave & Vickii and Chris & Ana who have so generously taken in CJ and Lyndsey this week. It gives us all such peace of mind to know that the girls are in the best care imaginable! You all earned jewels this week!

Thank you for your continued prayers. Please pray for Connie and Al over the next few days as they will be learning what they need to do to care for Will once he is able to come home. It will be a big adjustment for everyone.

The Vent is Outta Here!

Will is finally off the vent! It was a bit of a struggle to accomplish that today, but cheers rung out late this afternoon when they finally pulled that puppy! The Doctor that has been with Will since he arrived at U of M rotated out today and another Doctor took over Will's case. Well, the new Doctor wanted to proceed very conservatively since he had not had much experience in treating Will and he wanted to leave the vent in "just in case". While we appreciated his concern, the vent was also causing fluid to collect in Will's lungs and that's not a good situation either. So, after a rather long and frustrating day, the vent finally came out late this afternoon. Will is on a cpap and so far his blood gas levels have been excellent. Will's latest heart tests also showed an improvement in his ventrical activity so he was able to stop one of his meds. Will is on TPN for tonight since the cpap can cause air to build up in the stomach. But, if his blood gas levels stay as good as they are now, he should be off the cpap soon as well. And then the boy can eat again! He is a little agitated today, but I would be too if they cut my food off.

The Boy is Thriving

Will should be having his MRI right now. He is doing very well. Other than his little seizure issue, he is recovering remarkably well from his surgery. His little body is doing all the things little babies are supposed to - pooping, peeing and enjoying mama juice! We are all looking forward to losing that vent tube so he can be held and fed like babies like to be! If all goes well today, Will will be moved to a moderate care room soon. Just one more step closer to home! He's already been booted to the corner of the PICU nursery (just because he doesn't need the one on one care as much any more). We can't tell you how good it is to see positive steps. After being in what felt like a holding pattern for so long, this is definitely a warm beam of sunshine!

Thanks so much for your prayers and encouragement. That has been what is sustaining the family through all this!

Accomplished Sprinter

Will mastered "sprinting" yesterday. If it weren't for the MRI tomorrow, they would have removed his vent tube today. So, they are letting him further refine his sprinting skills today and plan to remove the tube after the MRI is complete. Will had his own little New Years Eve party last night watching the ball drop with his Mom and Dad. CJ was able to spend the evening with friends and Lyndsey is enjoying some Nana time at home.