1 Year Ago

Exactly one year ago, on May 31, Lucas came home for the very 1st time from the NICU at St. Joseph’s Hospital. Lucas was so tiny, thin, & sleepy. He weighed under 6 lbs. The doctors told us to not let anyone near Lucas because he was still very weak & they didn’t want Lucas to get sick & then need to be readmitted back into the hospital.

Today, one year later, Lucas weighs 22 lbs and is such a strong boy. So, we celebrated the 1 year anniversary of Lucas coming home! Today, Lucas went with us for the 1st time ever to Bernard’s which is a restaurant at our gorgeous nearby Ocotillo Golf Course. We went around 2pm so the restaurant was empty. Lucas did great! While we waited for our food, I feed Lucas some apple sauce using his Cars themed baby spoon. Plus, he drank water out of my glass. He sat on my lap and enjoyed looking around. Around 7pm, we took Lucas for his 1st swim in our pool. He was in heaven! He loves being outside and he loves bath time. So swimming was a perfect combination of his favorite things!
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Awesome Nanny

Look what Jackie (our amazing nanny) made for Lucas’ 1st birthday!!! It is a good 4 feet long. So much hard work and effort. Jackie amazes us with her craftiness and creativity!

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Swinging

Lucas is definitely a loved and spoiled baby boy! Papa Lou, Papa Bob, & Nani are all within an arms reach while he is swinging at the park in our neighborhood. Lucas looks so darn happy!!!

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3 Pokes

Today’s blood draw didn’t go as smooth as usual. The technicians failed at the first two attempts. Phoenix Children’s Hospital has a rule of only 2 attempts per child per day. Since we need the blood & urine results by next Monday’s endocrinologist appointment, the technicians went to the doctor to request an approval to try a 3rd blood draw attempt. He said yes. This time, they put a hot pack near his veins for 5 minutes to get the blood pumping. Luckily, the 3rd poke worked. Phew.

Poor Lucas cried the entire time. It just breaks my heart to be the one who holds him firmly while the technicians attempt to find a vein. But I know we need the results to show an improvement with his rickets. For now, Lucas has a standing order for a urine test and blood draw every 3 weeks.

Lucas was so tired from the experience that he fells asleep in the car. Poor baby boy.
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Memorial Day

This has been a fun packed Memorial Day weekend. On Friday, Papa Bob, Nani, and Papa Lou visited to enjoy some fun time with Lucas. Over the weekend, Papa Lou, Gigi, & Aunt Sam all came over to play at different times. Lucas loved playing with everyone!

Gigi brought Lucas a 4th of July themed sun hat. Much to our surprise, Lucas loves wearing the hat. Whenever I try to take the hat off, he starts to cry. Apparently, Lucas is a baby boy who loves stylish & sports themed hats. One more reason for me to go shopping. Ha!

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Night Party

Why does Lucas decide not to sleep from 2am to 6am only when Dada is out of town for the weekend? Thanks for the love Lucas! Let’s not throw another all nighter party tonight. Pretty please. 🙂

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Disney Planes – “Dusty”

One of Lucas’ favorite birthday presents is “Dusty” the activity plane ride-on toy from the Disney movie called Planes. He loves the fun plane noises & bright blinking lights on the propeller. Apparently, Lucas is a lover of planes just like his daddy. Thanks, Aunt Jen & Aunt Sam!

BTW – Lucas is nonstop walking around the house while holding on to a couch, wall, or any piece of furniture. Pretty soon, he’ll be walking without help. So happy to see that rickets is not hindering his walking ability.

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Rickets Update

Today, we received good news from our endocrinologist. For the last 4 weeks, Lucas has been taking a medicine called K Phos three times a day with a really high dose. K Phos contains phosphate, potassium, and sodium. Three weeks ago, Lucas’ blood results showed a low phosphorus level of 2.6 where as the average range is 3.5 to 6.6. Today’s blood results showed the phosphorus level to be not just normal but slightly high at 7. Huge improvement! This should mean Lucas’ body is finally getting the phosphorus it needs to start repairing his bones and he could be on a path to resolving the rickets issue. We’re excited!

In another 2 weeks we will once again have blood and urine tests run. Praying we continue to see some positive improvements. We I understand the rickets could take a year or more to resolve. However, we are celebrating every positive sign.

Happy 1st Birthday!!!

Today, Lucas turned 1 years old. We never knew we could love someone so much! His blues eyes are the most amazing color in the world. His curly hair is getting a bit long but we aren’t ready to trim his hair and possibly lose the curls. He constantly smiles and laughs. We couldn’t imagine a more perfect baby boy!

Over the last 2 weeks, he’s started to talk more. Now he clearly says Dada, Mama, and dog. So he’s got the whole family. 🙂

Recently, Lucas does this adorable thing where while he is falling asleep on our chest his eyes will be shut and out of nowhere he gives an absolutely gorgeous big smile. We don’t know if he is just crazy content, comfortable, or feeling loved. Maybe he’s dreaming or chatting with the Lord. All we know is we love watching him fall asleep and his big smiles fill our hearts with joy!

On Saturday, we’re having a small birthday party with our family. We still need to avoid germs until the big surgery is completed. Next year, we will throw a big party and everyone will be invited.

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Frustrated by C. Diff

We are becoming more and more frustrated about how long it is taking to get rid of the C. diff infection. C. diff is a bacterial infection which causes severe diarrhea and for Lucas losing some of the ability to absorb vitamins & nutrients in his formula which in turn is causing nutritional rickets (bone issue). It appears the C. diff infection most likely started in December. Fast forward 6 months and we are still fighting to get rid of C. diff. Daily, Lucas takes 4 doses of vencomycin (C. diff medicine), 3 doses of K-Phos (rickets medicine), 2 doses of Prevacid (acid reflux medicine), and 1 dose of Florastor (probiotics to fight off C. diff). I just want Lucas off of all the drugs & healthy again.

This morning, I started to feel like I’m letting Lucas down as a mother. I am suppose to protect him from harm and fix all of his issues to keep him healthy and happy. But no matter how many doctors we speak with, we can’t get the darn C. diff & rickets to go away. I’m so fearful these medical issues will cause Lucas to be shorter as an adult. This is the time when babies are suppose to grow. Since December, Lucas hasn’t shown any real growth in height or weight due to the rickets. He was in the 50% for height and now he is in the 17%. I would hand over every one of my possessions if it would mean a quick cure for Lucas.

On the bright side, before I got too down, I talked with Peggy (a.k.a. Nani) and she gave me a much needed pep talk. As Peggy said, I will not let the devil bring me down or feel like I am not doing enough. Lucas is on a long road to recovery and when I’m down I will go to my savior for support & strength. With the Lord all things are possible. I pray the Lord will help us cure Lucas and give us some positive test results to show us that we are moving forward towards eliminating all of Lucas’ medical issues. Amen.

Zoo Time

This post is a bit delayed. Around the beginning of April, Lucas had his 1st zoo experience. It didn’t go exactly as planned. As you will see below, Lucas slept through the first 45 minutes. Ha! I wish you could have seen how wide eyed and amazed he looked to open his eyes from a nap to see a massive flock of flamingos and a tropical environment. Priceless!

Lucas’ 1st time near giraffes…and sleeping.

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Lucas 1st time near elephants… and sleeping.

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Lucas’ 1st picture at a zoo where he is awake!

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Rickets Confusion & C. Diff

The 2nd round of blood & urine results are in. The independent (non-PCH) (terrible bedside manner) endocrinologist said he has no idea what is going on and recommended we schedule an appointment with a nephrology doctor. Not the answer we wanted to hear. So we are no longer seeing him. Goodbye! 

Dr. McClellan (endocrinologist at PCH) is still confused. He said it could be an x-linked genetics (life long) related rickets or an unknown nutritional issue that is causing the rickets. We like Dr. McClellan’s friendly personality and appreciate his honesty. But you don’t normally want to hear from your specialist that they have no idea what is the final root cause of rickets. On the bright side, he put together a treatment plan. So we are sticking with him!

On last Tuesday, Lucas started on a phosphorous supplement called k-phos. He takes the compound liquid prescription 3 times a day. The game plan is to retest his blood & urine once a month. Plus, we will have another round of x-rays after 3 months on the medicine. If we don’t see any sign of improvement after 3 months, then we will be referred to an out of state bone specialist.

We are so lucky! Last night, we had a phone consult with Dr. Tebben who is an endocrinologist at Mayo Clinic in Minnesota. The doctor is confident Lucas has nutritional rickets that is being caused by the c.diff infection. Not a genetics form of rickets. That would be wonderful! Basically we need to beat c. diff and give Lucas the daily phosphorus medicine to eventually get rid of rickets. Feeling hopeful!..Yesterday, Lucas had 6 diarrhea diapers and one even tested positive for blood. So the pesky c. diff is back. Last night, we restarted the c. diff medicine. Go away c. diff!!! You are stealing all of Lucas’ vitamins & nutrients.