Huge Success

Lucas is comfortable and doing well post surgery. He is even already off supplemental oxygen. The procedure itself was a HUGE success! Today, the surgeon planned to inject steroids pre-dilatation into Lucas’ esophagus at the anastomotic site (the place where Lucas’ esophagus was reconnected) to try to keep it from restricturing. The totally awesome great wonderful exciting news is that the surgeon chose not to use the steroid because Lucas’ esophagus had not shrunk back down at all since his last procedure in February! Praise God! Moreover, the surgeon was able to dilate his esophagus from 12 mm to 14 mm – just 1 mm shy of our 15 mm goal.

Now that the upper stricture is in such good shape, our focus is on the lower congenital stricture which is still less than 6 mm. To correct the lower stricture, Lucas will likely need major surgery to remove that section of his esophagus, but that procedure is for another day. Today, we count our blessings and be thankful that we have such a talented GI surgeon right here in Phoenix.

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Morning Dilation

Lucas’ next dilation is tomorrow (Monday, March 31) @ 11am. Really eager for this surgery because Dr. McOmber (surgeon) promised to give us an update about whether or not he has located a top children’s hospitals which can best perform Lucas’ next big surgery. Praying for a positive and information filled update. Thank you for all of the prayers. The Lord continues to protect our precious Lucas.

Many New Firsts

On last Friday, March 21, Lucas said his 1st word which was…”Mama”! Then, on Saturday, March 22, when we were at Papa’s & Nani’s house he said “Mama” and “Dada”!!! Now he says “baba”, “bye bye”, “Mama”, & “Dada” whenever he is in a talkative mood. Of course, we don’t think he understands what he’s saying. But, we’re in heaven whenever we hear him yelling or saying words. As of this week, he now he has enough strength to transition from crawling to a sit up position. Plus, he understands the word “no”. Whenever we say ” no” he stops whatever he’s doing & turns around to look at us.

On Saturday, March 28, Lucas drank out of a sippy cup for the very 1st time. He did great! Due to Lucas’ esophagus issues, his doctors had us hold off until now to try a sippy cup. He quickly drank an ounce of water down. We’re starting out slow to ensure he doesn’t aspirate the water into his lungs. This is a concern due to his medical issues. Looking really good so far.

Every morning Lucas wakes up with a big smile. We are blessed to have such a happy baby. We always say Lucas looks even more happy & adorable with every passing morning. We love you so much!!!

Lucas’ favorite things to do are waving, playing chase after Dada/Mama/Skyler/nanny, having a book read to him, being held while someone walks around, standing up while holding on to a firm large object, and of course crawling everywhere (the faster the better).  He can play on his own but prefers to play with someone rather than himself. He is constantly moving and is unstoppable!

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Blood Test Reults

Lucas is continuing to baffle doctors. His blood results show slightly above average calcium, normal vitamin D, and insanely high alkaline phosphates. Normally, a baby with rickets would have low calcium and vitamin D which is not the case with Lucas. Now, our GI and pediatrician referred us to an endocrinologist to review Lucas’ unique case. We see the new doctor on next Thursday. We’re ready for some answers.

BTW – On Monday, Lucas has the next dilation. Thank you for all the prayers.

Hard Day

The last 24 hours have been informative & frustrating. On Tuesday, Lucas’ pulmonary doctor randomly decided to perform a chest x-ray to ensure his airways looked clear & healthy. Much to everyone’s surprise the radiologist reviewed the x-ray and informed us that Lucas has small airway disease (ex. maybe he will grow into having asthma) and he has rickets which means he has a vitamin D/calcium deficiency. I have asthma so I wouldn’t be shocked if Lucas has the fairly popular airway disease. However rickets is very disturbing. This means Lucas’ bones are much more likely to fracture or break with just a small little fall. They believe his antacid medicine named Prevacid could be causing the vitamin D & calcium to not be absorbed. Acid reflux is a major issue for children with strictures. On Thursday, we are having blood work taken to determine his current levels of calcium, vitamin D, and many other items. On Friday we are stopping Prevacid cold turkey to see how Lucas’ body reacts. Now we are once again waiting for blood work to create the next steps in Lucas’ medical game plan. Feeling deflated & heartbroken.

Rickets can be reversed once Lucas’ calcium and vitamin D starts to be absorbed. In November, we had an x-ray taken which showed no issues. So it appears the rickets happened sometime over the last 4 months. At least we caught this quickly rather than have many months or years go by.

Our surgeons & doctors have heard of Prevacid causing rickets in random patients. But this is their first time seeing this happen in one of their patients. Good old Lucas is always keeping the doctors & us on our toes!

On the bright side, Lucas is crawling & constantly moving. He has no care in the world and doesn’t realize he is stressing out his parents.

10 Month Birthday!

On Friday, Lucas turned 10 months old! We are amazed at how much Lucas constantly wants to move & play. He never just sits down to rest. He is always on the go. We like to allow Lucas enough freedom to roam & learn new things all over the house. But we’re always 2 feet behind him ready to say “no no” or pick him up before he is close to hurting himself. He definitely keeps us on our toes. We’re dead tired by the end of the day.

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Huggle Buggle the Bear

Big 1st! Lucas is pointing to where “huggle buggle the bear” is hiding on each page in the book. Plus, he loves when anyone says “hello” or “bye bye” because his favorite thing to do is wave (either hand). We love seeing his brain working.

Nani’s Going Home

Big day. Nani’s going home! She has been such a trooper with the pain and nausea.

The surgery was a huge success. The surgeon was very pleased, excited even, about how well it all went. So, we have high hopes that she is on the road to a wonderful life free of back pain and full of golfing. 🙂

Nani’s Back Surgery

We realize this blog usually only has updates on Lucas. However, we always intended for the blog to be a way to share updates and stories about our entire family. We consider it fitting that our first non-Lucas post is to lift up & ask for prayers for Peggy (aka Nani). This morning, Peggy is undergoing a much needed back surgery which started at 7:30am. Please lift Peggy up in prayer! May the Lord guide the surgeon’s hands & mind to complete a perfect surgery which will take away all of Peggy’s pain.

Researching Options

On last Thursday, Dr. McOmber (GI Director at PCH) informed us that he does not have a contact in AZ who can perform the type of diagnostic testing that Bryan found through research. Plus, he is unavailable for the next 2 weeks. So he will not have time to call any out of state doctors until the end of March. Basically we’re in a hold pattern for the big surgery. That did not make us happy. So we are calling all of the top GI hospitals to try to obtain the answers on our own. Today, we made some progress with the Children Hospital of Colorado and Children’s Hospital of Philadelphia. Soon we’ll make a post with more details to see if anyone may be able to offer some assistance or have a connection.