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Answered Prayer: Aiden is going to Boston!

Thank you all for your continued prayers specifically regarding this matter. The last 48 hours have been filled with multiple answers to our prayers and concerns about getting Aiden to the Aerodigestive Center at BCH. As you know, we have been concerned about how to transport Aiden to Boston, and have spent many long hours trying to identify appropriate transportation and work out logistics, while waiting to hear back from BCH with a definite date.

As part of the transportation issue and to obtain approval to take Aiden to BCH, our insurance company had requested a compilation of very detailed letters and other information from the pediatrician and the various specialists that Aiden has seen. The insurance company also requested that the doctors make a specific medical determination as to how they felt Aiden should be transported. Yesterday afternoon, while Hannah was at the pediatrician's office finalizing information to be sent to the insurance company, she received a call from the folks at BCH. They were able to work out the scheduling issues so that Aiden's appointments will begin on August 5th, less than 2 weeks away!

Now we were really worried about how to transport Aiden. We have researched a number of options and contacted various transportion organizations, but none seemed to work out. This morning, we heard back from the insurance company. Based on Aiden's medical history and the doctor's recommendations, they authorized an air ambulance for at least the first leg of the flight. The return will be dependent upon what is found in Boston and Aiden's treatment plan.

Whew, what a relief! Due to Aiden's oxygen requirements, continuous feedings, cyanotic vomiting episodes, uncertain reaction to flying, and need for access to certain medical equipment, we have been very concerned about how to best transport him. There are still a number of details to work out, but all of the major elements are now in place, which is a such an answer to our prayers and a weight off our shoulders. Now we must pray that God will give us the right doctors and give them wisdom to know what to do.

Your prayers have meant so very much to us -- it is impossible to express just how the knowledge of all of your petitions going up to the Father on Aiden's behalf have upheld us throughout this. Please, continue to pray that we will find answers and solutions in Boston. We are so very grateful for each of you. Thank you from the bottom of our hearts.

Summertime

Today being our 8th wedding anniversary, we thought such a momentous occasion deserved something extra special--like a blog update! ;-) As we reflect back, the past 8 years have brought so many changes...5 houses, grad school, several different jobs, 4 different cities, and...3 kids who are now 10 mos. old!!!

The boys have gotten so BIG! Evan now looks like a toddler and is so tall...he is such a sweet boy, so tender hearted. Anytime Ethan or Aiden get upset, he gets a very concerned look on his face and will put his hand on their arm or head, and sometimes cry with them. Ethan is into EVERYTHING...he is quite the little monkey, because he seems to get into places and things that no one could have imagined. He is so fiercely independent, and constantly wants to GO, GO, GO! Physically, Aiden's development is not quite to where Ethan and Evan are, but he sure is mentally. It is so sweet to watch -- he gets SO excited when he is with his brothers, and he tries so hard to talk to them. He was the first one to say "mamamamama" (albeit only when he is upset!), and is so alert and engaged with everything that is going on around him. He loves attention, especially when someone will sit and talk with him. In the past couple of weeks, Aiden has nearly caught up with Ethan: he now weighs over 18 pounds, and is almost as tall as Ethan. It seems like he suddenly became huge overnight!

Every night after work, Manish will sit in the play area (a/k/a "jail") and play with the boys for a little bit until bed time. That is the highlight of their evening, and it makes Aiden's day. We put him in the Bumbo where Manish can protect his lines, and he is so thrilled to be with Daddy and his brothers, he is totally content to just sit there and watch them! Ethan and Evan have both been standing and taking steps on their own, without holding onto anything. They are so proud of themselves, particularly Evan! When he stands up for any length of time, he gets a giant grin and will stand there and clap for himself (see video clip below), while Ethan will say "Yay!". Ethan and Evan were finally getting over ear infections. They have been battling them since May, and have been on a number of different antibiotics. Of course, when they don't feel good, they don't sleep well, eat well, don't want to do anything but be held, so it is hard on everyone. They recently finished their last course of antibiotics and seemed to be doing better, when Ethan's ear infection came back with a vengance this week, and he is just miserable, poor baby.

We have taken the boys in the pool several times now in the last couple of weeks, since it has been in the triple digits here (being very careful not to get anything in their ears, of course!), and they were over the moon...everyone absolutely loved it. Hannah's Mom and sisters were able to visit for the 4th holiday weekend, which was a lot of fun. This was the first time that Aleta and Abi have been able to see all three of the boys, and the boys met their cousin, Kaelyn (Aleta & Tim's baby), who we saw for the first time. Aleta brought the boys adorable little swim trunks, so we had to show them off. We tried hard to get a picture of all four babies together, but as you can see, it is hard to coordinate four sets of baby eyes! They all looked so patriotic and had adorable outfits on for the 4th of July parade, but unfortunately, they didn't last long enough for a picture of all four!

Regarding Aiden's health: he continues to retch and vomit, and it seems to be increasing in frequency. We have been waiting and waiting to hear back from Boston Children's (BCH) regarding specific timing, but still have not rec'd any definite dates. When we spoke with them last week, they told us that several of their OR's have been put under construction and they are trying to re-shuffle and re-schedule cases, while also trying to work out the scheduling with multiple specialty doctors, many of whom will be on vacation for much of August. The coordinator told us that if they were to put him in the next 'available' opening, it would be the end of September, but given the nature of his case, they are trying to fit him in before the doctors go on vacation. As you can imagine, we were crestfallen to hear that -- but we also know that all of this is in God's hands, and He certainly knows best. He has worked everything out thus far, so we must trust that He will take care of something as insignificant (to Him) as scheduling. In the meantime, we are trying to figure out transportation arrangements to get Aiden to Boston, which is also proving to be rather challenging. Please continue to pray that the Lord will work things out according to His will, and that we will be able to find help for Aiden in Boston.

Such big eyes, Ethan

Evan has such a nice smile

The twins are in "jail"

Ethan throws a baby punch

He surprised himself!

Evan wants to examine everything

Caught in the act!

Hello Ethan!

Aiden loves to read

What a long day it has been for Aiden

Evan's face says it all...

Evan loves it when the front door is open and he can look outdoors

Big smiles!

Aiden wonders why we are in the backyard

This picture was the best frame out of about twenty. No one would sit still!

Ethan, eat your Cheerios

Evan loves them (of course!)

Aiden's eyelashes are getting even longer and more curvy

He does not seem to care for his new hat

Evan LOVES to go for a swim!

Even though he can't go all the way in, Aiden loves the water too

Ethan likes to kick around in the pool...he is already treading water!

Ethan loved being all wet

And now he is splashing everywhere (and everyone)

Evan just can't get enough of this

Ethan is ready to get out

Aiden is soaked

Evan does not want to stop swimming

Aiden does a few final splashes

All four babies

June update

How time flies! It's so hard to believe that the boys are now 9.5 mos. old...where has it gone?! They are growing so fast it's literally hard to keep up with them these days! Ethan and Evan are now mobile and are moving so fast! They want to explore and are crawling EVERYWHERE. They are both standing up on their own and "walking" while holding on to...everything. They have both taken a few steps and we expect that they will soon be walking on their own. I guess then it will be 'no holds barred'...uhoh, we are definitely in TROUBLE!!! Ethan and Evan are no longer liking their bottles or baby food so much. They want the real thing, "big people" food and cups. Aiden has been rolling around and is starting to sit up on his own and loves being around Ethan and Evan. He wants to talk and play with them so badly, and loves to smile and 'chat' at them (in the video below, go to the 1 minute and 20 seconds point to experience one of the funniest thing you will ever hear: --> Evan cracking up). Aiden has grown so much in the last couple of weeks that his new nickname is "The Little Magnificent Head." Manish says that he is simply an "adorable, glorious little head!"

We know that many of you are wondering what is going on with Aiden. He had a rough couple of weeks when he caught whatever Ethan and Evan had, and started having significant difficulty breathing. We were so determined to do everything we could to keep him out of the hospital this time...and, as always, our pediatrician was a wonderful help. It was difficult for all of us, but as he was starting to get over that patch, he started throwing up large quantities of bile. Of course, this made everything about the vomiting and breathing difficulties even worse. We were very concerned, as was our pediatrician. While we were waiting to hear back from Boston, we had made an appointment to visit a new GI doctor over in Ft. Worth who had been recommended to us, to see if he had any suggestions or might be able to help with the vomiting. The GI doctor did not seem at all concerned, but told us that "this could go on for years," gave us a couple of prescriptions and told us to come back in a couple of months.

That weekend, Aiden pulled his ND tube partially out -- not a lot, but with an ND tube, placement can be very tricky and any little movement can be a problem. Rather than sit in the ER for hours on end over the weekend, we decided to hold his feedings for a short time and try to allow it to work its way back on its own, then take him for an x-ray on Monday to determine placement. We were able to do an x-ray and bloodwork to check his electrolytes at a local "urgent care" center, so we did not have to go all the way to Children's in Dallas. We thought (and sort of even hoped) that perhaps he might have some kind of electrolyte imbalance due to all of the vomiting, which would account for the way his hands have been shaking for the past month or so. The x-ray showed that the ND tube was well into the duodenum, but Aiden continued to vomit large quantities of bile.

Did I mention how very thankful we are for our wonderful pediatrician? She is literally a God-send! She knew that something just wasn't right, and at her suggestion, we went to the ER at Children's to double-check his tube placement.

It was a very long night, but in the end we were so thankful that we did go. We made the tough decision to replace the ND tube rather than trying to re-position it. This is especially hard on Aiden, because he is placed on a little "rotisserie" with his arms strapped above his head and his whole body strapped to a board while they turn him around and push and pull the tube up and down his nose under live fluoroscopy, attempting to get it into his duodenum. He is awake and alert and screaming the entire time -- they do not give him any kind of sedative or anything for the pain -- and it usually takes at least an hour and a half or more. When they pulled the old ND tube out, they found the reason that he was vomiting so much bile. Somehow, the tube had looped back around on itself and had developed a good-sized knot just before the exit point, and for some reason, it did not show up on the xray. They believe that this was holding his duodenum open and allowing the bile to pour back into his stomach. The doctors, nurses, even the radiologists and technicians could not believe it. They said they have never seen anything like it, and were showing it to everyone. That's Aiden -- without fail, it is always the most unlikely, impossible things that happen to him. He is now back to throwing up primarily stomach mucous, and as odd as it sounds, we are strangely relieved.

On another note, we have heard back from Boston. They do believe that they can help Aiden and have requested a copy of his complete medical records before they begin to schedule any procedures or testing for him. It has taken a lot of foot and finger work to obtain his medical records (we are still waiting for the remainder from his long stay at Children's), but this weekend, we sent a whopping 1500+ pages and numerous CDs of Aiden's medical records to Boston. These were primarily his NICU records from Baylor...he has taken out a few trees! Once they receive and review his medical records, the folks in Boston will be able to give us a more definitive schedule. Right now, we anticipate that we will likely be taking him to Boston sometime around late July/early August. Everything is still very tentative and there are still many, many details to work out, including how we will transport him there, so please pray that God will give everyone involved wisdom and will continue to work everything out.

In closing this update, I want to share an excerpt from a Spurgeon devotional that was such a timely blessing recently. It is entitled "The Troubles of My Heart" and references Ps. 25:17. He writes:

"It is wonderful how difficulties flee in the face of Omnipotence. The sick, who have been given up by the physician, often recover. It is, perhaps, God's mercy that the physician gave up. When you reach the end, God has only begun. The old proverb, "Man's extremity is God's opportunity," is certainly true. If God wills it, fevers fly and diseases disappear. As a soldier obeys the commander, God says to Death, "Go," and it goes, or "Come," and it comes.

It is the same in our circumstances. Often, days open dark with gathering clouds and yet end with a bright sunset. I should not wonder that some of you in looking back are quite surprised with your current situation. This morning I was talking with a gentleman who said, "I cannot tolerate waste in my home, and this is the reason: if ever there was a poor wretch who lived on hard times and envied a dog its piece of bread, it was me. But now God has been pleased to prosper me, and I often look back on that season of poverty and thank Him for having helped me through it." You see, dear friend, God can turn the wheel; He can make the bottom spoke the upper one, and He can do it all in a few days.

Though sin and sorrow rests like a double burden on your body and soul, go to Him and say, "Turn Yourself to me, and have mercy on me, for I am desolate and afflicted. The troubles of my heart have enlarged; bring me out of my distresses! Look on my affliction and my pain, and forgive all my sins." (Ps. 25:16-18)."

True, there have been many days in the past 9 mos. when we have wondered why and had many questions. It is human nature when you see your child in pain on a daily basis and can do nothing to help. The human council that we have received during this time has wide range of extremes: everything from sympathy and sorrow, to strongly expressed advice from those who have not the faintest idea what it is like to go through something like this. We are so thankful that those who have no understanding have not had to experience anything of this nature and hope that they never do have to understand what it is like. Ultimately, we must trust that our Heavenly Father holds the future in His hands -- He is faithful, and His ways are not our ways. As we are reminded every time one of the boys smile -- we truly have so much to be thankful for. God has been so good to us, He has given us so much, and we have to trust His heart and know that He makes NO mistakes -- there truly is a purpose in every change He makes.

Aiden is sound asleep

The boys just wanted to say "howdy" to everyone!

Evan wonders what is going on

Evan and Aiden are laughing it up

Here comes Trouble...(a/k/a Ethan)

Evan and Ethan have been exploring everything on the floor

Evan...I don't quite know what to say. Just don't forget your butt cream.

Ethan thoroughly enjoyed his meal!

Ethan enjoys playing in the laundry basket

Dad got this shirt for his Father's Day/Birthday gift

The back of the shirt states how I survived the brutal on slaught of Ethan and Evan for over 12 hours while Hannah was at the hospital with Aiden. I was bit, chewed on, harassed, mocked, attacked and emotionally abused...but I survived!

Mom & Dad used my birthday as an excuse to come visit (actually, it was really to see the grandkids)

Grandpa just can't get enough of Evan

Grandparents and the boys

From May...

Below are some additional pictures from May that we wanted to share...

Ethan thinks he is so cool

Classic Evan

Happy Aiden!

Aiden is saying his bedtime prayers

Evanly Boo, what are you up to?

Ready to play, Ethan?

The twins are loving it!

"Prince Pea" on his new throne