Some updates and reflection

Jaron "talking" to his sister and brother

Kids are asleep, the sun is shining, and I'm finally having a bowl of Frosted Mini Wheats for lunch at 2 p.m.  I've been reflecting on the last few weeks...  Jaron is now 3 months old!  He has his second cold which has lasted nearly 3 weeks but so far he's been able to fight it well.  We have a new piece of equipment in our house now, a suction.  It works wonders to clean out his nose. I'm not sure how I raised 3 other babies without one!  He is on a new med for acid reflux which is working much better.  And we FINALLY found a formula that doesn't upset him!!!  It's called Elecare and it requires a prescription because it is for babies with very specific dietary needs.  I have taken him to 5 doctor appointments in 3 days and been referred to 2 new specialists.  He only weighs 9 lbs. 9 oz.  which is not enough for a 3 month old but I'm working on it.  I think he will always be a little guy but if he keeps up this really low weight they will start talking about a g-tube.  Brian and I are both nervous about that.  On a happier note, Jaron is making sounds!  His first word was "ow." It's actually quite pitiful and adorable at the same time.  We'll take it, since its the first vocalizing he has done.  And when he cries he either says "waa" or "ma" which melts my heart every time.  He is even starting to try to socialize with us for brief moments in the day.  Usually around 7 p.m. he kind of looks at whoever is talking to him and he opens his mouth like he wants to talk, smiles a little and every once in awhile makes a sound.  After about 5 minutes he starts to fuss and then falls asleep. They are precious times!  It has been a crazy 3 months.  I have felt deep love and deep despair, great joy and great fear, but mostly an abiding peace beyond explanation...  The first few weeks were so scary and overwhelming.  To be honest I wasn't sure if I should guard my heart for fear of losing him at any moment, so I clung to him as if each breath could be his last.  But over the last several days I have read other family's stories of their Miller-Dieker children who are 4 or 7 years old.  I am now trying to prepare my heart, mind, soul and body for a long bumpy road.  One I never imagined I would be on.  I am excited and terrified in the same breath.  Every day I am reminded what a special gift Jaron is to our family.  He has touched the lives of his mom, dad, brother, sisters, grandparents, aunts, uncles, cousins and it has branched out to more people than I know or even realize.  On several occasions I've been told that someone I don't even know has been praying for my baby boy and our family.  And that touches me deeper than I can say...  Kids are awake, sun is still shining, time to go be mommy!

While they were out...

If you read the previous post you know that Lukas, Haylee and Hannah were away all last week.  This gave us a rare opportunity to finish their play structure in the backyard and surprise them this morning!  Our awesome neighbors down the street, offered us their play structure 2 summers ago.  I told them we wanted it but we hadn't had a chance to come and disassemble it to bring home or the money to build it.  We decided it was a good use of our tax $ (all the extra supplies) and finally got it a few months ago, made a plan to completely remodel it to fit in our backyard, and began construction.  We got a beam from Jer and Christy, some scrap pieces of wood from the office, and we even had some decking supplies saved from a project Brian did 6 years ago!  Katy, Staci, Ben and Jenna helped Brian begin the project in February.

In order to get the play structure safe to play on in 1-3 days (Brian only had 3 days off work), we needed MORE HELP!!!  We called in the troops...  Great Grandpa Creamer, Papa Lee and Uncle Jer came to get 'er done!  Great Grandma brought lots of yummy food, including some trout they had just caught a week before to feed all the hard workers.  Today we surprised the kids with a club house, two swings and a tire swing!  Complete with 5 shape windows (triangle, square, rectangle and 2 circles)!  We still need a hand rail on the stairs and deck to keep the second story safe, but they literally spent 5 hours outside just today.  Lukas barely stopped swinging the whole time and Haylee's partial to the tire swing.  Hannah can't decide which is her favorite and she was constantly reminding her brother and sister not to break anything ie. the tire swing.  We have some finish work to do and we plan to make a little sandbox area below the play house someday...

Something for everyone!

Cool windows!

VBS

The 3 big kids had the opportunity to participate in the Rainier Church of God, Vacation Bible School!  They are so blessed to have teen aunties and uncles, Jordan, Bethany, Jenna, Staci, and Ben, whom they LOVE!!!  Lukas, Haylee and Hannah spent the WHOLE week at the Friant Farm!  They rode the horses, played with the dollhouse, the Wii, the girls got their nails painted and hair crimped (can't believe that's back again!) and went to VBS.  They had a blast going on a SonQuest Safari to... "Get It" God's Word - Psalm 119:11, "Get Found" God's love for us - John 3:16, "Get God's Love" Love God and your neighbor - Matthew 22:37-39, "Get Praying" Philippians 4:6, "Get Going" Work for the Lord - Colossians 3:23.  Hannah inspired a nursery-wide week of potty-training!  I guess since she went potty, the other kids wanted to also.  The teachers were more than happy to reward the little munchkins with gummy worms (nice snakes) and marshmallows.  Hope it worked!  Papa got the CD of all the songs they learned and all 3 are so cute dancing, singing and acting out the music.  

Jaron is dedicated to the Lord

Although our sweet boy's life is already in the Lord's hands, we wanted to have a special dedication and prayer as a church body.  On June 13th, our families gathered at the 9 a.m. service at Solid Rock.  It was a sweet moment!  All 3 kids came up on stage with us, Brian handed Jaron to pastor Phil and warned him that Jaron arches.  After handing him back to me to rearrange him so that his back was to Phil's chest, he was able to share briefly that Jaron was born with a rare disease with problems in his brain.  He shared Psalm 139 "God saw his unformed substance when he was in his mother's womb and had already ordained the days that were created for him." Phil thanked Him for this precious precious baby boy prayed that God's will would be done in his life, and for grace and wisdom for Brian and I, and then said "We love him" and gave him a kiss!
After church we gathered at our house with the Friant family and the Albaugh's and Creamer's for a yummy BBQ!  We are so very thankful for the love and support and especially the faith of our family.  God is good!

Things Jaron Loves

Baths (he falls asleep in the warm water)

Light-up disco ball from his Tio Abuelo Larry and his blue pillow (for neck support)

Silver disco ball from his Great Aunt Sandy and a spinning motor from Daddy

Being held with his back to you

His turtle made by Auntie Katy

A lot has happened since our hospital stay.  While in the hospital, I requested a Rx of Zantac for acid reflux hoping this would help with the screaming that seems to follow every feeding.   A week later it was still getting worse, he was now crying and arching his back up to 2 hours after eating.  On May 27th at 8:30 p.m. Jaron had his first seizure.  Brian was at work and since the neurologist had told me that a seizure lasting less than 5 minutes was not an emergency, I just sat and watched him.  But at 9:30 it happened again.  I called Christy and she came over to make sure everything was ok.  We looked up some info about seizures and we talked until Brian came home.  I had been thinking about trying soy formula to see if it would resolve Jaron's belly pain.  Brian brought home some formula to try that night.  By the second feeding he was like a totally different baby!  I was so excited!  He actually let Haylee and Hannah hold him for about 20 minutes each!  Usually he is arching and crying whenever he is being held.  I called the neurologist the next morning and explained the spells he'd had the night before.  She confirmed that they were seizures and prescribed a medication over the phone.  I knew better than to call the pediatrician this time since they would have insisted I go to the ER for a possible seizure.

This week we saw the Developmental Pediatrician, Dietician, Physical Therapist (3-in-1 appointment) and the Geneticist.  We discussed Jaron's hearing and follow-up with an ear specialist since his ear canals are so tiny and he needs hearing aids.  I talked to the Dev. Pediatrician about our traumatic ER experience and asked for ideas to avoid another episode like it.  According to the geneticist and all the info about MDS, we will be dealing with pneumonia quite a bit.  She recommended we see a pulmonary specialist at Legacy who can assess Jaron's specific needs for airway support etc.  Her idea was to have him make a list of all the requirements so that we can take it along to our next ER visit.  Hopefully a letter from a Dr. would be better received than our "parental opinion."

I asked if we needed to be extra careful about Jaron's exposure to illness. The geneticist said that Jaron has a normal healthy immune system but he is physically less able to fight illness when he gets it.  Hence, an episode with a virus and possible pneumonia turned into 3 days in Intensive Care.  We have 3 active children who love their baby brother and we don't want to create a bubble and quarantine Jaron from his family and all the love.  So we just have to try to be careful to avoid obvious exposure, wash hands, and keep from kissing or touching Jaron's face.  The girl's are great at only kissing him on top of his head!

Backyard Photo Shoot with Auntie Lissa