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

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