Significant Moments

Forgive me for the LONG post, but there is much to update on.  It has been a busy past 6 weeks!  Happy 4th of July!  Thankful for freedom.  Been thinking about Gal 5:1 recently, it is for freedom that Christ has set us free!

ANDY
Health Update and Stats:
Weight is 11# 11oz and 22 inches long!  He is 7.5 months old, 4 months adjusted. (Will be 8 months on the 11th).

We are working on rolling over, sitting up, reaching for toys and then picking them up, tummy time, and babbling, etc.

Andy's favorite things: DADDY, reading, kicking, cuddling, being tickled, banging on his little piano, chewing on his hands and blankets, sophie the giraffe, staring at himself in the mirror, and being outside (when its not 1,000 degrees).

In my mind I organize all of Andy's "issues & progress" according to systems, so that's how they will be listed here.  Can't get the nurse out of me!  In each section, you will notice things to continue praying for.

HEAD/EYES/EARS/NOSE/THROAT

• Andy has a flat head.  He came home from the NICU with it, and although we have really tried to keep him off of it, it has not improved significantly.  Therefore, he is going to be fitted for a helmet to wear 23 hours a day for several months so that his head will shape up more rounded.  His fitting is on Thursday.  Perhaps he will get a big orange helmet in honor of football season around the corner?  :) 

• About a month ago, Andy started having quick episodes of tremors, that were seizure-like.  As soon as I realized it was happening, it would end.  He has had an EEG and brain ultrasound, which have come back normal.  This is currently still being evaluated to determine if its a seizure, related to a GI problem, or medication side effects, etc.  Praying for patience, answers, and healing!

• Andy has had several hearing evaluations, which all demonstrate normal hearing!  They are watching him a bit more closely because of my one sided deafness.  He has had fluid in his ears for several months.  If this is not resolved by his visit next month, he will probably get tubes in his ears.
• His eyes no longer have to be checked.  The retinopathy of prematurity has resolved.  Yahoo!

• Praise!  Andy has not had any new illnesses other than the ear infection a few months ago!

Oh yes, one more thing about his head.... HAIR.... still working on that!  He is one cute baldy!

Mom, when is this EEG gonna be over so we can play?!

RESPIRATORY

• As of two weeks ago, Andy has weaned off of daytime oxygen!  Now he only wears it at night.  We have a sleep study scheduled for next month, if he passes that, then we can get rid of it all!  It has been wonderful to have more freedom with walking around our home, yard and transporting him without the tubes.  Now he can accompany me to the mailbox- ah the simple things!

• The doctors also said we could start bringing Andy out into public while it is summer time, as long as children do not touch him.  This has really expanded his (and my) social world.  We are able to bring him to church, but not stay in the nursery.  This has been WONDERFUL for us.  Andy met his church family for the first time 2 weeks ago.  This was such an emotional day for our family.  Our church family has carried us this past year, and continues to do so.  It was a joy to get to introduce Andy to all of the people who have prayed for his miraculous life.  We look forward to having Andy baptized on August 5th!

And I no longer have to fight this precious face to keep his oxygen on during nap time!

GASTROINTESTINAL

• Andy has been taking all of his feedings by bottle now.  He is still fed every 3 hours.  He was diagnosed with reflux while in the NICU, over the past few months it has gotten worse despite being on the max dose of medications, and he has developed other symptoms of which I will spare you the details. ;)  He is undergoing about 4 tests- gastric emptying, upper GI series, PH probe, and something else....  The last two tests, he has to be put to sleep for, so we have to wait until he is off oxygen completely to do these.  The other tests will be done this week.  I am hoping these tests will grant the doctor enough insight that she can get Andy some relief while we are waiting for the other tests to be completed.  I am thankful that he is continuing to gain weight and that his chest x rays look good (meaning he is not aspirating his formula- which means he is swallowing effectively! This was prayed for...for Andy to learn to suck, swallow, breath... remember?! Praise!).

• Oh, and we are starting to teethe- that's right.  Enough said...orajel, we love you.

MUSCULOSKELETAL

Playing with bubbles in therapy

• Andy is almost 8 months old!  His mind and personality appear to be right on track....he looks like he is ready to be on the move.  However, his body is still growing and coordinating, and functions more like a 3-4 month old.  This can be frustrating at times for him, because he knows what he wants to do, but can't organize to move to do it! Poor guy! It has been amazing to me to see his progress, though.  It seems he does something new each week!  He continues with in- home therapy 3 times a week.  We have come to really love his therapists!  Of course, Andy has charmed them all.

SENSORY

• As a preemie, Andy has problems integrating information he receives through his senses- sight, sound, smell, taste, textures/touch.  This is a common problem in preemies.  They can grow out of it and/or learn to cope with it.  Basically, it means certain noises, too much light or noise, certain fabrics or textures, extreme temperatures, even food consistencies can be difficult for him to tolerate.  He responds by becoming overwhelmed by crying inconsolably or by shutting down.  There are varying degrees of sensory integration disorders, and Andy seems to be pretty mild.  However, too much noise or stimulation seem to push him over the edge.  I am LEARNING what his limits are and what his signs are when he is about to LOSE IT, so that I can better help him cope, remove him from situation, etc.  To be honest, I live in fear of these moments because they are heart wrenching and it can take a long time for him to calm down.  Pray that I can be an observant mom and put his needs first, knowing when he needs days of rest and how much he can tolerate.

SIGNIFICANT MOMENTS

Andy got a new aunt when his uncle got married at the end of May.  Although unable to attend the wedding, he was there in spirit.  

First meeting with Brody!  This was Andy's neighbor in the NICU, and his parents have become good friends.  This reunion was significant on many levels.  I get tearful just thinking about how miraculous these lives are.  Oh how we have prayed, cried, and sung over these boys in the NICU.

June 16th, Andy was officially home (109 days) longer than he had been in the NICU (108 days).  This felt SIGNIFICANT!

Swimming at Nana's

First Father's Day

Off daytime oxygen

Meeting my college friend's boys

Meeting our dear friends' daughter, Sarah!

First trip to Target!

First time to church and wearing an outfit Grandma made!

This is Andy's first Fourth of July- we are celebrating by doing NOTHING!  Thankful to have a day without any appointments!

A brief update on Lawrence and me, for we have had lots of people asking about us as well.  We so appreciate the many prayers that you continue to shower on us.

Lawrence Plumbing turned TWO on June 1st.  I could not be more proud of Lawrence and all of his hard work.  He is an industrious man of such integrity, honesty, and care.  We are thankful for God's blessing upon his work!  We celebrated with a party.  It was fun to do something normal again!

Helping Daddy take plumbing calls....

Unfortunately, Lawrence  cut off the end of his forefinger at work about 3 weeks ago.  He had 2 surgeries and ended up having it amputated (just the tip - to the first knuckle).  He has been such a trooper.  It has been a loss; we have grieved.  Now he is adjusting.  He is doing amazingly well, no shocker to those that know him!  He is back in full swing at work, and we are thankful!  Please pray for continued healing, in particular for his nerves.  The healing process is painful and causes strange sensations.

As for me, my Crohn's disease is doing well and I am in remission.  However, I have developed Enteropathic Arthritis, which develops from the Crohns...it's just another body system it affects, causing pain in many of the joints.  So, I have had a few months of debilitating pain while getting tests and waiting on the diagnosis.  Thankfully, I have a diagnosis and there is treatment!   I will be starting a medicine called Remicade.  It is given via IV infusion every few weeks.  Insurance pending, I should begin treatments in about a week.  Other than for pain relief, I am anxious to get this started, because then I can get off the steroids.  I am dreaming of the day that I am "myself again" and I can exercise, etc!



Disclaimer: In the future, I hope to be more consistent with posts, so they aren't so long!  I also won't bombard you with such details of each of our health issues.  We appreciate your prayers.  I am asked about updates on us frequently, so this is a chance for me to explain it all.