Ryan Residence

Merry Christmas!

The Ryan family simply LOVES this time of year, and it seems to get better with each passing year.  Our children are now old enough to remember traditions from last year and are getting just as excited as we are (actually a little more so). Kailey has been singing Christmas songs and dressing in red and green since mid-November. Seeing her excitement, reminds me that it doesn’t matter what presents are under the tree or how pretty the decorations are, it is the love of family and friends combined with the gifts of faith and joy that make this time of year so wonderful.  So, throughout the hustle and bustle of this time, I encourage you to take some time to squeeze the ones you love and relish in the joy of this season.

I hope that I will be able to take my own advice and be present in the moment this season. In an attempt of freeing up some time in December for much needed margin, I got my Christmas cards done early (put them in the mail today).  As I addressed our cards, I saw so many names of dear friends that I hadn’t seen or talked to all year.  How sad that I have let time slip by without picking up the phone or stopping by. There aren’t excuses; I should have called. Please accept my apology and know it wasn’t intentional. Around the same time, I clicked on the link to our family blog and saw that it has been over a year since I have posted anything. How did that happen? I guess no news in good news, but I decided that it was time to update the site and let you know what is happening around the Ryan house.

It’s been a full year for the Ryan family, here’s the short version…

We are doing well and staying busy. Time is speeding up exponentially around here (or so it seems) and I am wanting it to slow down. Our babies aren’t babies anymore, our living room no longer looks like Babies R Us, we don’t need a stroller when we go out, and our house has no children in it at 7:30 in the morning M-F…I don’t like it.  I miss having them around all day. Kailey is 6 and reading bedtime stories to her siblings.  McKenna is five and is Connor’s best speech therapist.  She is now in school five full days a week, and growing more independent with each passing day. Connor is three and also in school five days a week. He is riding the bus to and from school, and learning so much.  He is no longer my baby, but thankfully he still loves to cuddle as if he was. Danny has had an exciting year at work and is doing much better than he was this time last year health wise. I am busy as ever and am still running to keep my sanity. In November I ran the Savannah Marathon and am currently training for the Disney Goofy Race and a Half Challenge.

Now for the full update…

Connor is such a gift to us.  You cannot be with him and be in a bad mood.  His smile is contagious and he is always sharing it with others.  He’s had plenty of progress over the course of this year.  He’s really picking up sign language and he’s been building his vocabulary. In September he started jumping with two feet and is learning how to run. Mostly we are amazed at his increased level of comprehension. Although things never move as quickly as we like, we are amazed by the steady progress.  Connor turned three in August and thus transitioned out of early intervention and into the school system.  As a result he started big boy school (Special Needs Pre-K) and currently goes five half days a week. The bus picks him up at our front door, and he couldn’t be happier to get on it each morning. He has wonderful teachers, para-pros, and therapists at school.  We are thrilled with his team. He is still getting his private therapies (thanks to KBW being renewed) and receives 7 total hours a week of therapy between school and private.  His favorites are Hippotherapy (OT on the horse) and Aquatherapy (PT in the pool).  Connor’s social skills are growing as well.  He loves to give hugs and already flirts with every girl he sees (especially if she has long hair).  His favorite girl, however, is still his mommy, or at least mommy’s hair.

McKenna is as lively as ever – she loves her friends at Pre-K and is always found with her Dee-Dee (Picture Linus with his blanket).  She brings so much joy to all of us – she is the life of the party wherever she goes and has such a love of life.  Her little mind is constantly turning and problem solving. She is a natural salesman, always negotiating and ending many conversations with “Is that a good deal, Mommy?” At school, she loves to be the teacher’s helper and has her teachers convinced she will be the grade level chair teacher one day. Her favorite student, however, is her little brother.  McKenna works daily with him asking him to repeat certain words or phrases as she plays “Speech therapist.”  Connor’s SLP has told her she is his best teacher and she agrees. McKenna is fearless and tries things that only McKenna could dream up. Her curiosity and sense of adventure is impressive.  After “practicing her balance” on the outside of the two story catwalk banister last winter we enrolled her in gymnastics. She has really enjoyed it each session since then.  She loves practicing at home and teaching her new skills to her older sister.
Kailey has matured so much over the last year – she is not the little girl that she was even just a few months ago.  I look back at pictures from last spring and am amazed. Kailey is  now reading bedtime stories to us at night and is growing into a caring, sensitive, and thoughtful young lady. She enjoys making breakfast for her family on Saturday mornings, and taking care of her little brother, or any of us when we are not feeling well. She is a natural caregiver and a huge help to her mommy.  Kailey loves school and has to be talked into staying at home when she is sick.  She works hard and always tries to do her best. She has been blessed with amazing teachers for the past few years, as well as great classes.  Many of her friends from Daisy Scouts are in her class as well as a few friends from last year. She enjoys Daisy Scouts in addition to her other activities (yes, she will be selling girl scout cookies again this year). Early in the year she took horseback riding lessons. Over the summer she worked on her swimming, and this fall she enjoyed playing Soccer for the first time with her dad as the coach.  It was a wonderful opportunity for her to make friends and learn more about Daddy’s favorite sport.  As that season came to a close, she began a dance/gymnastics combo class with her sister and is looking forward to sharing this time with McKenna each week.

Amy (written by Danny) has been in supermom mode for most of the year – she has been caretaker for Danny during his surgeries, has 3-5 appointments for Connor for therapies per week, and in her spare time has run a couple of marathons (and she’s going to run the Goofy in January – you’ll get an update on that on the blog after the race). She is room mom for each child and is in both schools on a weekly basis. On Sunday mornings she teaches Sunday School in a CGS classroom for 3-5 year olds (a Montessori influenced curriculum), and is excited to have McKenna in her room for the second year in a row. She also continues to be involved in the moms group at church, coordinating the monthly children’s adoration hour together with a dear friend of ours. Combined with math tutoring and the daily tasks of taking care of the kids and house, she keeps herself BUSY.

Danny has had a MUCH better year than he did in 2011.  As you may remember, last year was shadowed by constant pain that kept him on his back for a larger portion of the year than we would have ever thought possible. In an attempt to end the pain, we started the year out by heading to Florida on January 2nd for surgery at Winter Haven Hospital.  After a number of cord blocks and surgical procedures to alleviate the pain in 2011 that weren’t successful, we decided this final available option to address the pain was what we needed to do.   What was supposed to be a 90 minute surgery turned into over 4 hours, but all went well in recovery and the pain levels continued to improve for the 6 months following surgery.  Since then, they have leveled off, and while it is MUCH better than it was prior to the surgery, he continues to experience discomfort on a daily basis.  I am amazed daily at his strength and ability to get up each morning and keep going on despite dealing with this daily for 2 years now.  I’m so proud of him and all that he is able to accomplish, especially at work. Danny has worked hard this year to get ThreeWill in a position where they can create products that ThreeWill can now offer in addition to offering services. This fall they have released three new products (Popcorn, Pointer, and one to be announced soon), and Danny attended several conferences this past quarter promoting the products. You can find out more information on their website at www.threewill.com.

With all of this going on at work, he continues to put family first; he always there to spend time with the kids, help around the house, and take the time to be mystery reader at the kids schools, or coach their soccer teams. He is an amazing dad. He also remains active at our parish, serving on the parish steering committee and meeting regularly with men he has met through the CRHP program.  In his free time, Danny has continued to run and smoked me in the Peachtree Road Race last July.  In addition we have run two half marathons together this fall, and he is considering running a full sometime in 2013. In August, Danny turned 40, and we celebrated by throwing a surprise party for him. With over 70 people in attendance, there was no denying the impact that he has made on the people he comes in contact with.  It was such a fun night and one of the highlights of this year.

Other Highlights include our two big family trips this past summer.  We spent a week in Disney (Connor’s first trip) in May, and a week in June at a friend’s condo on Hilton Head island. Both trips were amazing in their own way. I made photo books for each trip that go through the various details.  For those that are interested they can be found at the links below.

– Disney Trip: http://share.shutterfly.com/action/welcome?sid=2AbuGTdm4asWJn

 
– Hilton Head Trip:  http://share.shutterfly.com/action/welcome?sid=2AbuGTdm4asWJ2

So, for the first time in a few years, health issues are not the main theme of our Christmas letter.  We realize that this makes us very fortunate.  I count my blessings every day that I am healthy enough to run (tomorrow morning is a 16 mile training run) and even with weeks like this one (8 doctor appointments for the family and 4 hours of private therapy after school) I am and thankful that we are not facing ANY upcoming surgeries, procedures, or awaiting test results. Routine follow-ups and therapy visits are our new normal and one that I would choose over years past any day.  I pray that this post finds you happy and healthy as well, and promise that it will not be another 12 months before my next post.

Merry Christmas and Happy New year from the Ryan Family

Love to you all,
Amy and Danny

I just pulled up the site and was amazed (and a little embarrassed) that I haven’t posted since Spring Break.  Opps.  Sorry about that.  I guess no news is good news, right?

We had a fun-filled summer and are back into the swing of things with school.  Kailey started kindergarten and is loving it.  She is reading better and this weekend did her very first book report. McKenna is turning 4 Wednesday and cannot wait.  She is so excited and is telling everyone she sees that she has a birthday coming up. Connor started school in September two mornings a week and is adjusting really well. This afternoon he starts hippo therapy with his OT. I am so excited about this and can’t wait to see the impact it will have on his core strength and sense of balance. While he is in school, I have picked up my mileage and will be running the inaugural Savannah Rock N Roll Marathon November 5th. I can’t wait. Danny’s company just celebrated 10 years, and to celebrate the company (and spouses) are going on a quick three day cruise.  I can’t think of a better way to taper for my race and am so thankful to our family for agreeing to watch the children while we are away.  I hope that you are having a fabulous fall and (like us) are getting excited for all of the holiday festivities that are right around the corner.  Can’t wait!

Until next time,

Amy Ryan

What an amazing week we had last week.  I loved, loved, LOVED having the kids home.  Danny was even able to take two days off for some family time.  Many memories were made and lots of fun was had by all.  It made me that much more excited about summer break, which will be here before we know it.  Here are some of the highlights, with some updates added in as well.

Saturday I had some girl time that morning with a long run followed by a baby shower for a dear friend.  It was a refreshing way to start the week.  Meanwhile Danny got a chance to do some yard work, Connor napped, and the girls went to see HOP with a neighbor.  All were happy when I returned home and that evening we enjoyed the freshly mowed lawn by grilling out and eating on the patio. A truly perfect evening!

Sunday we got the supplies and planted the vegetable and herb garden that the girls do with Daddy every year. We had a great deal of fun picking out which plants would be included this year, and we are all looking forward to the harvest season.

Mid-day a nurse from the company where we got Connor’s VEST from came out to teach us how to use the device.  She also showed us how to use his suction machine and recommended a different catheter to use on the end which arrived this afternoon. Surprisingly Connor does pretty well with the machine, and it seems to be working as he is coughing more and has gotten some of the nastiness that was caught in his lungs out.  His only issue is that it seems to increase the amount of vomit that he is experiencing, but as a girlfriend pointed out it means the mucus is leaving his system which is a good thing.  We’ll take it!  Connor is on a regimen of 10 hertz for 20 min twice a day, which has quickly become the family TV time. The five of us sit and watch a 30 min kid show together while holding Connor, so the girls are thrilled with the latest addition to our daily routine.  Today I heard a few times…”Is it time for Connor’s treatment yet?”

Connor's Vest Treatment

After she left Danny and Kailey headed out to plant the garden. Kailey’s attention span lasted at most 2-3 plants and then she was off to play.  So, Danny ended up doing most of the planting while the neighborhood kids played in the sprinkler out front.  I called everyone in a few hours later and sent the girls upstairs to change into dry clothes since Grammie was coming to babysit and we were headed out for a date night.  Shortly after Grammie got here she asked about McKenna’s new haircut.  Puzzled, since we hadn’t gotten her hair done, I asked what she was talking about and looked down at McKenna….

McKenna's New Hair Cut

The front 6 inches of her head was cut to a quarter inch in length.  Shocked I ran upstairs to find the scene of the crime.  In the ten minutes that she was changing out of her wet bathing suit she styled Aurora’s hair and used her craft scissors to give herself a new hairstyle.  There was a large handful of curls siting on the vanity table next to the scissors.  Here is where it all went down (picture taken after those were removed).

Aurora's New Hair Style

Danny and I were furious and near speechless (but not surprised).  Her beautiful curls have taken years to come in (her hair grows SOOO… slow and she has only  had one haircut before this) so who knows how long it will be before she looks “normal” again.  We spent the remainder of spring break demanding that she have her hair pulled back in a ponytail, since that looked less obvious, but now I am over it and able to finally laugh at it.  I can’t tell you the number of times today (her first day back at school) that I was asked if she found scissors or felt she needed a trim over the break.  It is so bad that it is obvious to anyone that sees her what happened.

Back to Sunday, Grammie saw our initial reaction and encouraged us to still go on our date and not let it ruin our night.  We did and had a wonderful dinner, but talked about the situation more than I’d like to admit.  After dinner we saw “The Fifth Quarter” which is a movie based on a true story about a family from powder springs, a suburb here in the Atlanta area.  It was an AMAZING movie, and quickly put into perspective how insignificant McKenna’s silly hairstyle really is.  She is still with us, she wasn’t in the hospital, or even hurt the slightest bit.  I left the movie theatre counting my blessings, and there are MANY to count.  Everyone should go see that movie! I highly recommend it, but bring your tissues.

Monday we went to the Atlanta Zoo as a family.  We had a membership a year ago that had expired, so when we got a card with their current promotion on it we decided to rejoin and head out this week.  Five minutes after entering the park we ran into some friends from church.  What a small world!  The weather was perfect, and we spent the whole day seeing all of the animal exhibits.  McKenna’s favorite was of course the elephants.  Kailey loved the new baby panda named Po after the character in Kung Fu Panda.  Connor rode his first carousel.  I loved watching Connor walk all over the park, and Danny enjoyed is first pain-free morning in months! It was a FABULOUS day.

Atlanta Zoo

McKenna watching the Elephants

Watching the Birds at the Zoo

Daddy and McKenna at the Zoo

Tuesday would have been my Daddy’s 70^th birthday (He passed away when I was a junior in college).  Kailey randomly asked about him the day before and asked if we could visit his grave site on his birthday and bring him presents, not knowing it was the next day.  I agreed so when we woke up Tuesday morning Kailey and McKenna made cards for their grandpa and brought them with us as we went out for the day.

We had plans to go to Fernbank Natural Science Museum and told the kids we would visit the cemetery on the way home (which is what we did). Fernbank recently opened their new children’s exhibit and it was awesome.  The kids could have spent hours in that room alone.   Even Connor was all over the place.  It was the first time ever that I have been in a public place and needed to keep an eye out for all three of my children.  I am so used to Connor being in the stroller or on my hip that it was a true joy to see him right in the middle of the madness.

Kailey and the geodes

Connor memorized by pulley

McKenna in a tree

After seeing each exhibit, watching the IMAX and finishing our picnic lunch Danny and I were ready to head out (Kailey was anxious to play some more).  With a promise to come back, she agreed and we were off to Arlington.  McKenna and Connor fell asleep in the car on the way there, so it ended up being special time with Kailey. She eagerly found his gravesite and explained that she needed to read him the card since he couldn’t open it and that she would leave it opened up so that he could see it from Heaven.  As my sweet 5 year old little girl read her birthday card to her grandpa and then sang him Happy Birthday tears rolled down my face. Her love for a man she has never met flowed so freely, and my heart ached for him to be here still.  He was made to be a grandfather and it breaks my heart that he isn’t here on earth to hold his grandkids, but I eagerly await the day that I get to see them united in Heaven.  Before we left we said a quick prayer and then Kailey said “I’ll see you in Heaven and I’ll give you a big hug.  I love you!”

Kailey reading her card to Grandpa

Kailey's card Left open for him to see

Wednesday we went to Catch Air (a local jumpy place that recently opened up) with some friends after hitting the gym and finishing Connor’s speech session.  We had lunch there and ended up staying for 4.5 hours.  I have NEVER lasted more than two hours in those places, but the kids were having so much fun that we hated to break them up.  In the end we left with just enough time to feed them and put everyone to bed.  All were tucked in by 6:30 that night and slept well.

McKenna with friends at Catch Air

Connor on Bouncy House at Catch Air

Thursday Connor had his swallow study early at Children’s Scottish Rite. Despite my nerves, it went very smoothly.  He ate and drank for them and though he showed signs of penetration with each of the substances there was no aspiration, so that was very good news. As the day progressed Connor started wheezing and it continued off and on through Saturday.  I am not sure if the barium caused the issue or the extended time outside that day, but it’s returned was not welcomed.  Thank fully he responded well to the Albuterol and has been better since Saturday.

Waiting for Swallow Study

While Connor was at the swallow study, the girls stayed with a Connor’s godmother and played with her kids. After the appointment I returned to pick up the crew and got to hang out for a few minutes before needing to leave.  She mentioned a book she had recently studied at her church and let me borrow it.  It is called Coach Mom and I have been really enjoying reading it. I look forward to sitting down each evening and gaining a few more nuggets of wisdom and am anxious to start utilizing several of the ideas in the book.  She talks about better utilizing our time and energy, and working as a team.  She speaks of creating a household that runs more efficiently and effortlessly.  These are all things I would love to get better at.  If you have small children and are overwhelmed with all of the running around and mundane tasks that seem to fill our days you should really consider reading this book.  It is an easy read and is packed with great tips.

After leaving my girlfriend’s house, I met an old friend and her kids at the local park.  She has a brand new baby boy that I have been dying to meet.  I hadn’t seen her since before she was pregnant and needed to catch up.  The kids enjoyed getting reacquainted and all of us had a fun time enjoying some beautiful weather with a picnic and playtime at the park. Again, everyone was playing so nicely that the hours seemed to slip by and before I knew it, it was almost 4:00.  We left the park in just enough time for Connor and McKenna to get a quick nap before Kailey and McKenna had their first swim lesson of the season at 6:00.  The lesson went well.  I really like their instructor and look forward to the progress I feel they are going to make this season.  After the lesson it was a quick dinner and off to bed.  By this point we were all tired and slept very well.

First Swim Lesson

Friday we needed some rest so we stayed home all morning and had what Kailey calls a PJs day.  It was nice not having anywhere we needed to be or anything we needed to be doing.  We watched some TV, did some crafts, played in the backyard, and enjoyed the quiet.  That afternoon we headed to a playdate at a school mate of McKenna’s.  It was a wonderful time and a joy to see 9 young children run around in springtime bliss between bounce houses, water tables, and popsicles.

On the way home from the playdate we picked up pizza and Daddy brought home the projector from work, and we had Friday pizza and movie outdoors.  I had purchased the movie Tangled for Kailey’s birthday and we decided to give it to her early and watch it projected on the side of the house after dinner.  The weather was warm and he bugs haven’t come out yet, so it was the perfect night for it.  Everyone loved the evening, and aside from bedtime getting pushed back later than normal, it worked beautifully and was a great way to cap off the week.

Since then we are slowly getting back into the swing of things.  Kailey woke up Monday morning with a fever so she has been out of school the last two days (here’s hoping she is able to go tomorrow).  As a result, many of my plans for these two days have been pushed off and the hustle and bustle of our normal schedules hasn’t returned just yet. Hopefully she is on the mend and the other’s will not catch whatever this was.  Please keep her in your prayers.

Lastly, on the update side, Danny’s pain free moment lasted 48 hours and then it all returned.  He has an appointment with the pain clinic next week. His CT scans were normal.  Connor had his follow-up with the ENT this morning.  His ear infections are cleared up, and although the tube on his left ear has fallen out his ear drum is functioning well so no need to do anything about it just yet.  We will follow-up with them in a month.  I am calling his allergist tomorrow to get the results on his immune testing, so hopefully that will all be negative, just like the testing that the ENT did for odd bacterial viruses was. His next appointment is his sleep study at Scottish Rite April 28th. In May he has a follow up with ENT, GI, and Pulmonology.  Many thanks to all of you that continue to keep our sweet boy in your prayers.  He is doing much better and looks so much healthier than he did even a week ago.  All of his therapists this week have commented as such.  I feel strongly that the new meds and treatments are working wonders for him.

Have a wonderful week.  Know that I keep you all in our thoughts and prayers.

Lots of Love,

Amy and Danny

Has it really been over a month already?  There have been so many times that I have thought about updating everyone, but didn’t have the time or energy.  At times it would have been to share joyous moments, and at other times because we needed prayers, but I didn’t want to post a simple blurb without updating everyone.  Now that I am at the beginning of spring break I have a little chunk of time to bring everyone up to speed I am finally writing the much-needed update.

When I last posted we had just come off the exhausting month of Jan. in which we all had stomach bugs after which the kids got strep.  Mid Jan. Danny had an extended hospital stay and he was still trying to recover from the infection.  Connor had two weeks of bronchiolitis (before the stomach bug); and the house needed repairs that we weren’t expecting…oh and Connor took his first steps. J

Since then…

• McKenna has started playing soccer through the YMCA and Danny is coaching her team
• Danny and I ran the Georgia Half Marathon and had an awesome race
• Kailey started PT once again and is going twice a month and getting stronger and more coordinated with each visit.  She currently spends her free time taking care of the newest members of our family, a bucket of earthworms and caterpillars.
• Connor is almost walking and is very proud of himself, but his respiratory and infection issues have continued to be a problem.  We have added 2 more doctors to his team, 4 more medical devices for us to use at home, 10 new meds to his daily routine, 3 more procedures/studies to be scheduled, 6 more vials of blood drawn, several x-rays and tests/cultures run, as well as numerous appointments.  He has also developed a whole new set of feeding issues that we are trying to work through as well as working to keep him safe in the meantime.
• Danny’s pain from his infection still hasn’t gone away despite various meds and dr. appointments. He has had to miss a good bit of work this year and is anxious to be pain free.
• The contract for all of the exterior home repairs has been signed and the project will start April 19^th (should take 1.5 weeks to complete).
• This week we rejoined the Atlanta Zoo and are going Monday.  We are all looking forward to this spring break and enjoying lots of fun family time.
• This week Kailey and McKenna will also start swim lessons which they are looking forward to.

So that is the update in a nut shell, for those that want the full story and the pictures that go with it…keep reading…

Five years ago I was VERY pregnant with our first child and we were at the Honda dealership finalizing the sale of our two door coupes for a four door sedan and an SUV with a third row for a growing family.  As we drove off the lot in our new cars I saw us closing a chapter of our lives and opening another.  Instantly I imagined the car filled with laughing children, soccer balls and cleats, and lots of mud.  I even pictured the little soccer ball magnet on the back.  What I didn’t imagine was that I would be here so soon.  While I don’t have a soccer sticker, I am now a “soccer mom,” which is the southern equivalent to the “hockey mom.”  McKenna is old enough now to play and is on her first team through the YMCA.  When we heard they needed more coaches Danny volunteered.  So the two are getting to play together.  Seeing that McKenna is a total Daddy’s girl she is in hog heaven with him on the field.  Three year old soccer is a site to see and I am not even sure I would even go as far as to say that it is organized chaios….it is just plain chaotic, but they are having fun and so are we.  The field where she plays has a track around the perimeter and Kailey loves racing whoever comes that day to watch the game (Grandma, Mom, Uncle Mike, etc.). Here is a picture of McKenna scoring her very first goal.  It was their first game which they won 3-1 and two of the three goals were made by McKenna.  The next pictures are of coach Danny and our runner girl, Kailey.

Her First Goal

Coach Danny

Racing to the finish

Speaking of running, Danny and I ran the Georgia Half Marathon at the end of March.  The weather was perfect and the run was even better.  We took over 6 minutes off my previous personal best and was just 2 minutes shy of breaking 2 hours.  It was a fun day with lots of friends along the way cheering us all on.  Below is a picture of Danny and I after completing the race. On the way home we were both pumped up about beginning our training for the New York Marathon in November. Here’s hoping that we get numbers.

Georgia Half Marathon 2011

Kailey: Last year Kailey had 7 sessions of physical therapy with Emily and loved them.  When our insurance coverage was used up we needed to stop, but with the new year we started back up and this year will be able to get 20 visits instead thanks to a change in our insurance plan.  Kailey goes every other week, and as good luck would have it…the older brother of McKenna’s best buddy from school has therapy at the same time at the same place.  So, while Kailey and her brother are in therapy, McKenna and her side-kick have a “play-date” in the waiting room and her mom and I get to catch up as well.  A win-win for everyone involved. J I love the fact that she looks forward to going and am amazed at how much it is improving her balance, running form, and endurance.   Before we know it, she may be running races with mom and dad.

In the meantime, however, Kailey is tapping into her maternal instincts (when she isn’t involved in an art project or putting on a sing/dance show for mom and dad).  After a unit at school on bugs and insects, Kailey came home and started digging in the garden to see what she could find.  Much to her delight there were several earth worms, caterpillars, and various other creepy crawly creatures.  She took a sand pail and filled it with dirt and leaves (for them to eat of course) and placed all of her new found friends inside.  The big fat caterpillar is named Katie, there are two earth worms named McKenzie and Earthy, and a roly-poly named Jessica (I believe there are more, but can’t remember who I am missing right now).  These lovely animals have lived in that bucket for two weeks now.  Kailey gives them water and fresh leaves each day and checks on them constantly. One morning the sun hadn’t even come up yet and she was outside making sure they had survived the rain the night before.  Last week she even started a scientific field journal recording through pictures what Katie (her favorite) ate, what her home looked like, and what she was doing each time that Kailey checked in on her.  It has been fun to watch her interactions with the new “pets” and her excitement when she sees a bite in a leaf or notices one begin to move.   She is absolutely fascinated and so curious. Here is a picture of Katie’s (and friends’) home as well as the field journal that Kailey has been working on.

Katie the Caterpillar

Connor: Our poor sweet boy has had a rough go of it recently.  He had two weeks of bronchiolitis in Jan. followed by a stomach bug and strep.  On the last day of his 10 day antibiotic he started wheezing (my last post) and was diagnosed with bronchiolitis and croup.  He started 5 days of steroids and frequent nebulizer treatments. A  week later he was worse instead of better and we went into see the doctor.  I gave him a breathing treatment right before leaving for the doctor’s since he was struggling to breathe and I didn’t want it to get worse while we were on the highway.  So, I thought I was bringing her an asymptomatic child.  Instead she still heard wheezing and when we took his pulse ox reading his oxygen level was 90 (we took it three different times to make sure).  So we gave him another breathing treatment just 40 minutes after the first one and his O2 level went up to 93.  The pediatrician felt it was most likely RSV, but did a nose swab to run a full panel of viruses to double check. Four days later he was still wheezing and the panel came back completely negative so we were back in to see her.  This time she ordered a chest x-ray to rule out pneumonia (negative) drew blood to run an allergy test (high by test standards, but not the allergists’), and started Connor a 20 day round of omniceff in case it was a sinus infection.  In addition she added Qvar as an asthma preventative, Claritin for seasonal allergies, and Duo-neb to help dry up the mucus in his lungs. After the 20 days of antibiotic he was still wheezing a few hours after his breathing treatments (at this point it had been 5 weeks) and we were referred to a pulmonologist and an allergist.

Thanks to an amazing friend who hooked us up with a pulmonologist that she knows we got into see the doctor we hoped to 6 weeks before his office staff said he had an opening.  The week before the appointment Connor started coughing; two days later he started draining out of his eyes.  The next day his eyes could barely open they had so much green discharge and his ears started draining nastiness as well.  In addition his cough continued and his nose kept running.  The morning of his pulmonologist appointment we pulled into the parking lot and I turned around to wipe Connor’s nose (which he hates) before getting him out of his car seat. He got extremely worked up and proceeded to vomit all over himself and the car seat (something he is doing almost daily these days).  Thankfully I had a change of clothes with me.  As I started cleaning him up I noticed that he was draining watery blood out of his right ear.  I freaked out and called the ENT on my way into the pulmonologist office. They called back and said to start Ciprodex drops and follow-up in a week.

Needless to say I was a little frazzled when I went into the pulmonologist office and we ended up being there for over three hours, but it was all well worth it.  He took extensive amounts of time going over all of Connor’s history and reading up on the little information that is available on his chromosomal deletion to make sure he had all the pieces before we talked about a plan and then felt like this was more than a kid with a virus, but rather a child that has a chronic condition that is compounded by low tone, developmental delay, feeding issues, reflux, asthma, etc…. After talking at length he decided to put Connor back on Prevacid for his reflux, kept him on the Claritin, added Singular, doubled his dosage of Qzar, added a chamber albuterol in addition to the nebulizer one that we have, ordered us a new chamber that he liked better, ordered a suction machine for us to have at home, ordered a vest for us to begin airway compression therapy, ordered a swallow study (he didn’t feel like Connor’s last one gave an accurate portrayal of what is going on), a sleep study to check for apnea, and possibly another pH probe. In addition he said it was possibly ordering a pulse ox machine for me to have at home and wanted me to see an allergist.  I left overwhelmed, but thankful that we were on an aggressive track to get Connor back to health.

Two days later we went to see the allergist for the first time.  He looked over Connor’s history and his allergy tests and felt that there wasn’t an allergy issue, but did a skin test for environmental allergies just to make sure (negative).  He then ordered a complete immune work up to be done and began his exam of Connor.  He looked in Connor’s ears and asked when we were seeing the ENT next.  I said May, and he asked if I could call them and go that day or ASAP (I called and got an appointment for three days later).  He then asked if Connor had ever had a biopsy of his esophagus and mentioned EE as something that children with chromosomal disorders can sometimes have.  Since I wasn’t certain that it had been ruled out, he wanted me to see the GI again (we have an appointment for May 2^nd…his first available).

From the allergist’s office we walked over to Scottish Rite Children’s Hospital to get the blood drawn for the immune test.  On a side note, McKenna was with us for all of these LONG appointments and was a true trooper.  I was very impressed with her patience and good behavior.  When we got to the lab the nurse looked at the paperwork I handed her and was shocked.  She said  “He is HOW big?  I don’t think we can get this much blood from him.  We are going to have to split this up.”  Exactly what I wanted to hear.  So, after being stuck three times and putting up a hell of a fight I took Connor home leaving them with only 2/3 of a vial of blood (they needed 6-7 vials to complete the ordered tests).  The next three days we took off from doctor appointments and got used to the new regimen of all the new meds (I made an excel spreadsheet to hang inside the cabinet door so that I can remember who got what and which meds they still needed (McKenna was on antibiotic for strep that she got again three weeks ago).

Last Tuesday we restarted the madness after dropping McKenna off at school by heading to the ENT’s office.  The nurse practitioner checked Connor’s throat and tonsils and in doing so, caused him to vomit all over the three of us.  After cleaning it all up she said his tonsils were a 2 out of 4 and didn’t need to come out now, but might in the future especially if the sleep study came back showing sleep apnea.  She also felt his throat was red and she wanted to do a strep test, despite the negative strep test that had been done the week prior.  The nurse came in to swab for strep and that also caused him to vomit again.  Then she said she wasn’t able to see Connor’s tubes since there was so much discharge in his ears and wanted to suction them out, so back to the suctioning room we went (Connor’s favorite…not).  We laid Connor on the table and immediately he started crying and worked himself up so much that he began to cough and threw up a third time. After that we were able to hold him down well enough for her to suction everything out and see that both tubes were still in and functioning. She sent the discharge off for culture and asked us to continue using the drops and come back in two weeks for a follow up. We left with a very worn out little man.  Connor fell asleep immediately in the car and I went straight from there to the hospital to draw the reminder of the needed blood.  Connor was not happy with me when he woke up there, but didn’t fight nearly as hard and they were able to get all 5 of the remaining vials that were needed and we were on our way with 1.5 hr to spare before I needed to get McKenna from school.

Since then his wheezing has appeared to stop and his discharge from his eyes is completely cleared up and the ears are getting better each day.  Connor likes his new chamber so much better than the last one, and we have a nurse coming to the house tomorrow to teach us how to use his vest, and hopefully his suction machine as well.  His sleep study is scheduled for April 28^th, and we are still waiting to hear from the hospital about the swallow study and pH probe. Our main concern with Connor right now is feeding issues and daily vomiting.  He is coughing on all thin liquids and not swallowing all of his food.  A half hour after a meal I will notice pieces of turkey or chicken nuggets in his cheeks that he doesn’t even realize are there.  I mentioned it to his speech therapist (who was noticing some of the same things) and she got very concerned. She brought Thick It to the next session and wants me to limit Connor’s food to thickened liquids and easily dissoluble foods until we have his swallow study done (still to be scheduled).  This would be fine, etc. that Connor is refusing to let me feed him any purees so he is basically back to a liquid diet with a few Gerber puff type finger foods added in here and there.  This evening I tried to give Connor his Prevacid which is a capsule that I break up and mix with some apple sauce.  He got so angry with me trying to feed it to him that he held his breath, began to turn blue, and started vomiting the second he took a breath. He was doing so well with his eating and his reflux at the beginning of the year, that it is frustrating to see this back stepping and development of issues that weren’t even there before.

On the plus side, however, Connor is continuing to be a happy little boy.  He is taking more and more steps and is pretty close to officially being a walker. He is starting to sit in little chairs and climb onto the couch.  He is acting more and more like a toddler every day.  He is getting into things and wanting to empty out cabinets, mess up his sister’s toys, turn off the TV, pull things off the table, and any number of things that upset his sisters and thrill me to see.  I couldn’t be more proud of my little man.

Connor is one of the Big Kids

Danny: My amazing husband continues to be in constant pain and has seen 3 doctors and tried various meds in a effort to resolve the issue and return to a point of “feeling normal.” We did not like the initial suggestion of surgery and sought out a second opinion.  That doctor agreed with us that surgery wasn’t the solution and said it would most likely be pain that his body would have to “get used to” and would not go away.  He told us to try ibuprofen twice a day for 6-8 months and see if that helped.  We didn’t like that option either.  After doing some research on the internet, Danny found someone in middle Florida that specializes in this type of pain and we have an appointment the end of May to see him.  In the meantime we are following up with doctors here to find relief for Danny until then. On Friday he had a CT scan and depending on the results from that will most likely go see someone at the Atlanta Pain Clinic as our next step. Please continue to keep him in your prayers. I know he is getting extremely frustrated with all of this.

Our Home Repairs: As I mentioned in a previous post, we have some wood rot that needs to be taken care of, as well as some siding pieces that have fallen off.  As we brought painters out to get estimates they could only do a portion of the job.  To make a long story shorter we would need a painter, window guy, door guy, sidding guy, and gutter guy, and  I wasn’t interested in being a project manager.  So we found three general contractors/companies that could give us a quote for the entire project.  After going back and forth with several of them (ne need to get into all of the fun drama) we signed a contract with a company that we have only heard glowing things about and are scheduled to start April 19^th. Three doors and three windows have been ordered and should come in in 2 weeks.  When all is said and done we will have all of the wood rot repaired, a completely new chimney, three new windows, three new doors, all new gutters with umbrellas, a newly painted house, and everything pressure washed, including the driveway, walkway, and patio. I can’t wait to see the finished product and have this all behind us….April 26^th!

Spring Break: This upcoming week is spring break and we are all excited from some nice weather and time off.  Connor only has two hours of therapy.  No one has doctor appointments, or school, and Danny even has two days off from work.  The week is filled with gardening, down time, trips to the zoo, science museum, park, indoor pool, and play dates with various friends.  I can’t wait.  Hopefully all of the sickness that winter brought is behind us and the sunshine that was out today is a sign of warmer calmer weather ahead…in more ways than one.

On the Bounce House in Back Yard

Swinging in the Back Yard

So, if you are still reading I am very impressed.  I’m not even sure I would still be reading, and it is my story.  But if you are…thank you.  Please continue to keep us in your prayers and we will do the same for you.

Lots of Love,

Amy and Danny

St. Patrick's Day Party 2011

What a day Connor has had….

The day began as any other, but midway through Mass this morning he started wheezing and by the time Mass was over I was ready to bypass the breathing treatment at home and go straight to the immediate care center. So, that is what we did.  A few hellos to various friends as we left church and then headed straight to the Children’s immediate care center.  Danny dropped Connor and I off and then took the girls to breakfast (we weren’t about to risk getting any of them sick by having us all go in). I was worried when I got there and saw the wait was 2 hours.  The place was packed with people coughing and blowing their noses all over the place.  Connor was seen fairly quickly though, so that was a relief.  He was wheezing quite a bit, but his oxygen level was 97 so that was great news. It actually registered at 77 when they first took it, but we knew that was off so we tried a few more times before getting the 97 reading (normal O2 level is 100). The doctor diagnosed Connor with  bronchiolitis (second time in 2011 for Mr. Connor) and prescribed him nebulizer treatments every 4 hours for two days and then 4 times a day for a week, along with an oral steroid for him to take twice a day for 5 days.

Thankfully Connor’s last dose of antibiotics (for strep throat which ALL FIVE of us had 1.5 weeks ago….the week after ALL FIVE had the stomach bug) was this evening so we don’t have to worry about that one as well as the new additions.

Before we left they did a breathing treatment that Connor was not found of. I have never seen him fight so hard to get out of my grasp.  It took two of us to administer the treatment and it wasn’t pretty.  Poor guy sounded like we were torturing him, and the remaining treatments today went just as smoothly requiring both Danny and I to hold him in one place.  Here’s hoping tomorrow’s are less of a fight, and that I will be able to do them by myself.  The good part about it, however, is that with each treatment he wore himself out with all the struggling to get loose and as a result fell asleep as soon as it was finished.

So with Connor asleep, we left and decided to enjoy the beautiful day that God had blessed us with.  We picked up his meds, a picnic lunch, and headed to the park.  We had a fabulous time playing on the playground, feeding the ducks, as well as a nature walk, and was back home in time for Connor’s next treatment. 🙂  We then spent the next several hours in the back yard trying to soak up as much of the sunshine and 60 degree weather that we could.

As the sun went down, Danny and Kailey headed out for their Valentine’s Day date (he took McKenna out Saturday night).  They were so cute.  Kailey was extremely excited and told all the neighbors her plans while jumping up and down.  They went to Fridays for dinner and she got to have their dirt cake for dessert, followed by a trip to Target where she got to pick out a new horse doll. McKenna stayed here with me and I told her that she could have whatever she wanted for dinner… she picked Raisin Bran…doesn’t get any easier than that for me. Yeah!

As we were cleaning up after dinner Connor started to walk around with his walker.  I looked over and for the first time I saw him change directions on his own!  We have been working on this the last two weeks in PT, but he wasn’t getting that the had to use his hands to pull the walker in the direction he wanted it to go.  Well, I guess it clicked, because all of a sudden tonight he was able to go wherever he wanted. Here is a quick video I shot this evening of him walking around the kitchen…

Needless to say, I am so proud of him.  Our Connor is on the move (as long as he has something to push in front of him). I feel like I can see his brain thinking and problem solving all the time now.  It is amazing how many things he is able to figure out on his own these days.  So, a hard day for my little man, but lots of sunshine mixed in, in more ways than one.  Had to share.

Hope you had a wonderful weekend and wish you the Happiest of Valentine’s Days tomorrow.

God Bless and as always, thank you for keeping us in your prayers.

Love,

Amy and Danny Ryan

And the fun continues….

At my girlfriend’s wedding last week the DJ got us girls onto the dance floor with “I Will Survive.” Little did I know as I danced with my former roommates that this would become the theme song for the upcoming week (No, Danny didn’t leave me and no heartache was involved, but it took all the love I had to make it through).

I have been meaning to write for days, but couldn’t catch my breath long enough to sit down at the computer.  Needless to say there are several things to update you all on.  Last week was a week that I’d like to pretend never happened, and to be honest I have no idea where to even begin with an update, other than to say…WE SURVIVED!

Danny: For starters, let me pick up with where I left off with Danny.  He is still in pain and has spent more time in bed than out of it, but is getting a little bit better each day…I think?  Yesterday was his first day back at work, and although he didn’t have enough energy to go to his meeting at church that night he was able to return to work today. We will see how he is doing this evening.

Last week he was hoping to work half days at the office and the rest from home, but that proved to be too lofty a goal.  Monday I took him into work (he wasn’t able to drive due to the pain meds he was still on) and when I picked him up realized that he had overdone it.  He went straight to bed and spent the whole next day there as well.  He tried to go back in on Wed, but then needed to stay in bed both Thursday and Friday, as well as the weekend.  Midweek we decided to make an appointment earlier rather than later to follow up with the doctor since neither of us expected him to be down this long. Danny’s pain was persistent, his color was off, he mentally wasn’t himself, and was constantly nauseous and weak. The appointment was Friday afternoon, and thanks to my brother who watched the three kids, I was able to take him by myself.  The doctor felt his infection is gone (though he didn’t take any blood to check that theory) and the remaining pain is due to the inflammation.  He gave Danny an injection to stop the pain cycle and numb the pain for a few hours and switched him to a high dose of ibuprofen in hopes that the anti-inflammatory portion of the med would help the swelling.  He said things might get better as time goes on, but if not our next step is surgery.  We left discouraged.  This past weekend we were successful in switching him off of the narcotics and onto the ibuprofen.  It is keeping his pain at about a 3 on a scale of 10, so Danny felt that was pretty good. He is still nauseous, but his color is better. We are praying that he will continue to improve and that this will be behind us soon without surgery being required.

That is just the beginning, however.

Sickness: The stomach bug came through our home this week like nothing I’ve ever seen before.  McKenna came home from school Tuesday and took a nap (something she never does).  Two hours later, as I was wrapping up with Connor’s therapist, McKenna woke up crying.  I went upstairs and she was covered in vomit as was her bed.  As soon as I got her cleaned up she got sick again.  Basically she got sick every ten minutes for the next four hours.  The poor thing hasn’t looked that bad since coming out of surgery last May. She refused to take the Zofran and threw up any liquids we gave her.  Eventually at 10:00 she fell asleep in our room. She woke up twice to get sick and then a few hours later with pull-ups that needed to be changed (sorry if this is TMI).  I cleared my (and her) schedule Wednesday and waited for the rest of us to get sick.  Connor threw up once Wed and once Thursday, but both seemed more reflux related then viral, so I thought nothing of it.  The rest of us were fine, so she returned to work Thursday and I went on with normal activities….and then Thursday night came.

As I was getting the kids into their PJs and preparing to go out with my girlfriends for my birthday (which was the previous week) Danny came in and said he was feeling more and more sick.  A little while later I started feeling yucky as well.  Soon, we were both down for the count.  I stayed home and got the same bug that McKenna had had on Tuesday.  Danny did as well, however his was MUCH worse since he had been on so many antibiotics recently that his body didn’t have any natural defenses left to fight the virus. I have never seen someone so sick.  In hindsight I probably should have taken him to the ER for the third time in a month to get IV fluids in him.  He was losing so much.  I think his lasted about 8 hours with him getting sick every 10 to 15 minutes, where mine wasn’t anywhere near as violent.  As a result, I was the healthier of the two and therefore the one responsible for cleaning up and taking care of Kailey when she woke up at 2:30 AM having thrown up all over her bed.  The three of us were a miserable sight the rest of the night.  I have had my share of stomach bugs in my life and I have cleaned up after my kids when they have gotten sick numerous times, but never at the same time.  That took the meaning of sacrificial love to a whole new level for me. YUCK!  I hope you never have to experience such fun times!

So, I cleared our calendar for Friday, Saturday, and Sunday and we all stayed home.  The kids complained of stomach aches, but were acting normal midday Friday. Danny wasn’t feeling much better all weekend (He was so weak when I took him to the dr. on Friday). I was feeling better Saturday, but after dinner Saturday night was back to yuck all day Sunday.  So, instead of taking the three kids to mass by myself for the third week in a row, I was on the couch with Danny Sunday morning. Thankfully, my MIL was able to bring us communion that evening and help with dinner for the family. J

There are many more twists and turns to our attempts at a healthy household, but you get the picture.

So, you might be thinking that is it…but alas…there is more.

Home Repairs: The night before the snow storm in Atlanta, one of the planks on our chimney siding fell off.  All of a sudden, getting the wood rot around some of our windows was moved up on the priority list, but nothing could be done then.  Danny covered it with a tarp and I put it on my list to call repairmen when the snow melted.  Instead I was in the hospital with Danny that week, so it was moved to last week.  I had three people come out and with each one the amount of water damage and repair work that is needed grew larger and larger.  We are still looking at contractors, but it is now looking like new windows, doors, siding planks, gutters, paint, etc…..not a small project, or something I want to deal with right now.

Connor’s Therapy: In addition, Connor’s therapy schedule has only been approved through Feb. 4^th, so this week was the time to request an extension of his twice a week speech.  We gathered our letters and prayed for the best at Thursday’s meeting.  Instead, she came in saying she had been told (in her review meeting that morning) that Connor would be moved down to once a week of Speech and transitioned over to a Primary Care Service model that they are putting into place (basically canceling all of his PT and OT as well to focus on his primary need which would be speech).  I was floored.  They want to switch him from four hours of therapy a week to one…right when he is starting to take steps and make such great progress.  I couldn’t and can’t let that happen.  Connor’s speech therapist (who was at the meeting) and I tried to emphasize how this new plan is not in the best interest for Connor and that it is medically necessary for him to continue his therapies.  She left saying that she would appeal the decision once more and see what she could do.  Then the three of us from the meeting spent the weekend thinking about it and trying to come up with a solution that would work for all parties involved.  There is red tape with BCW, Medicaid, and Insurance as to who is paying for what and how much therapy each will approve…to many details to begin to try to explain.  I talked to each of them at length on Monday and we came up with a plan that I am hoping will work.  She was going to present the plan that afternoon and is coming over Thursday with the paperwork to sign and results of the appeal. I haven’t heard from her, so I am not sure if that is a good thing or not.  Please join me in praying that we get enough of an extension on Thursday that we do not need to stop his therapy while I jump through necessary hoops to get all of the approvals and paperwork in place.

McKenna and Kailey’s Speech: Next, McKenna had her educational evaluation with the county last week and will be evaluated for speech (articulation errors) on Wednesday.  We referred her in October and didn’t get the evaluation scheduled until the beginning of Jan.   It was cancelled due to snow, and then because Danny was in the hospital, and then because she had the stomach bug.  Here is hoping that tomorrow morning’s appointment does not get cancelled.  If all goes as planned, her IEP meeting would then be Feb. 8^th, the same day as Kailey’s IEP (1 yr review meeting for her speech).  How I got so lucky as to have an IEP for all three of my children and to have all three come up for annual review the same week each year is beyond my knowledge.  The first week of Feb has been one that I look forward to (my anniversary weekend), but I thinking my impression of the week may soon change.

What’s next….I guess that brings us today (good news to report).

Connor’s Tear Ducts: This morning Connor had his appointment with the ophthalmologist to remove the stints from his tear ducts.  The original appointment was two weeks previous, when Danny was in the hospital and was moved to today.  We were told that they would try to get the stints out in the office, and if he wasn’t able to sit still enough we would need to go into the surgery center and have them pulled out under anesthesia. Needless to say I was praying that today’s appointment was a success.  We had to wait over an hour in the waiting room and Connor screamed bloody murder as two of us held him down , but they  are out and no surgery is needed.  The dr. said his symptoms should clear up (crusty eyes) and if not to call him.  The next step would be to go in surgically and inflate a balloon in his tear ducts that would need to be surgically removed 6 months later.  I promptly told Connor that wasn’t an option and that he needed to clear up any issues, as if he has anything to do with it.  We will wait and see.  From where I sit now, I think I’ll take a little crustiness over another surgery for the poor little guy.

So, we survived, and hopefully the worst of all of the above is behind us, but we aren’t out of the woods yet with any of it.  Even the stomach bug, which I thought was gone for good, might be lingering as Connor threw up twice while we waited in the carpool line for Kailey this afternoon. Praying that we have “normal” week here soon.

Thank you for your prayers, thoughts, and for reading this novel of a post.  I hope future ones will be more positive and much shorter.

Love and Peace,

Amy and Danny

Several years ago on a run I was told something that has stuck with me to this day.  One of the ladies in our group was sharing the good, bad, and ugly of her life at that moment.  In response our instructor started commenting on the trials of life (Cancer, death, job loss, etc.) often happen along with many blessings (milestones, new children, new friends, goals met, etc.).  She said it is like two trains running side by side with one containing the hardships while the other the joys and that the trains are constantly running side by side throughout our lives.  I liked that.  We always have trials, some harder than others, but there are so many beautiful things that are occurring in our lives during those times.  Some people refer to the mountains and valleys that we travel though in life, but I like the idea of the side by side trains better.  It is hard to say a year like our last one was a valley when there were so many amazing things that happened during the year as well.  Yes Connor had 5 surgeries, McKenna had 3, I had one, and as a family there were hundreds of doctor appointments and therapy sessions, but we also took the kids to Disney World for the first time, went to NYC as a couple, ran triathlons, I lost the baby weight, and so many more happy snapshots that will stick with us for years to come.

And so the train ride continues.  This week has been one that will be remembered for years to come.  As many of you saw on Facebook, we have had quite a week with several exciting and not so exciting developments.

First let’s visit the train of our challenging developments…

A week ago last Wednesday, Connor started coughing, which turned to hacking and then to wheezing.  We started the nebulizer and took him in the next day.  Same as last winter, Connor has developed Bronchiolitis and we are using the nebulizer on a regular basis in hopes that it won’t need steroids or anything more serious.  He still has a cough a week later, and way for a while but the wheezing is gone. 🙂

The day after taking Connor into the immediate care, Danny had some pain that got unbearable. So, at 3AM we loaded up the kids and went to the ER.  He was checked out and they determined that he had a bacterial infection that needed to be treated with antibiotics. The kids were amazing and sat quietly for hours as we waited for some news. They released him Saturday morning with oral antibiotics and pain medication.  He spent Saturday and Sunday in bed and Sunday morning started to spike a fever.  We called the doctor and they said we needed to come into the ER once again and would most likely be admitted so that he could receive IV antibiotics instead of oral ones.  That is what we did and by Wednesday morning he was able to switch back to oral meds.  After making sure he didn’t spike a fever on the oral options they released him and we went home Wednesday afternoon.  He has been in bed since then and is not out of the nightmare yet, but is getting better with each passing day.  It was a crazy week with not knowing from day to day whether we were going home in a few hours or staying through the night once again.  Thankfully we have the most amazing and selfless family.  They all took turns staying with the kids so that I could stay at the hospital and they could continue “life as normal.” We couldn’t have gotten through it without them.

Enough of that train…let’s switch tracks…

Wednesday, an hour after we got home from the hospital, Connor’s PT came to work with him.  Towards the beginning of their session he took a step, and then did it again a few minutes later, and then took two steps, and then three.  I was so excited.  I grabbed the camera and was able to capture it on film so that I could go upstairs and show Danny who was in bed the footage.  Since then he has tried a few times to take some more, but has fallen each time.  I have the film, however, to know that he can and will start walking before I know it. What a way to be welcomed home!

Tuesday, was my birthday and my mom came to the hospital to stay with Danny so that I could go home and hug the kids for a few hours.  When I got there, they had decorated the house and helped Grammie make a chocolate cake with cream cheese icing.  We all sung “Happy Birthday” with Danny and my mom on speaker phone and then the girls helped me blow out the candles.  The cake was delicious and everyone enjoyed it, even Connor. After getting the kids to bed I headed back to the hospital thankful that I had the chance to see them that evening. 🙂

Thursday I was able to take Connor to his nutritionist appointment at the GI’s office since Danny was back home.  They weighed Connor and he had gained a pound in the last 7 weeks!  This put him at the 3%…the first time that he has been on the chart for weight since he was a month old!!! She made some changes to his diet to make sure he is getting the vitamins and nutrients that he needs.

This afternoon I had the privilege to watch one of the most beautiful weddings, visit with dear friends that I haven’t seen in years, and watch one of my dearest friends from high school marry the man that God handpicked for her.  She is one of those women that I always have an always will respect and admire and I couldn’t be happier for her than I am today.  I am truly blessed to be able to be their friend and loved getting to share today with them.

In addition to reunions and milestones, the long days in the hospital gave me a rare opportunity to get things accomplished that I otherwise don’t have the time to do.  Highest on the list was our desire to switch over from CaringBridge to a family blog site.  As you can see we were able to get that done, and though it is a work in progress I am thrilled that I was given the gift of time to begin the process.

So, I encourage each of your to take time to relish in the many blessings that are currently happening in your own lives despite whatever trials our Lord is bringing you though.  They are precious and should not go unnoticed.

Love and Peace,

Amy and Danny

I have started this post three or four times over and nothing that I write seems to adequately express the joy that Danny and I felt tonight as we watched Connor take his second step ever (the first one was the day before Thanksgiving) and then do it multiple times during his PT session.  By the end of the hour he was taking two or three steps at a time.  I am so thankful that I was able to get it on video, or else I am not sure that I would believe it really happened.  Here is his walking debut.

He continues to amaze me every day. He is crawling up and down stairs on his own and is starting to let go of the furniture and stand unassisted for a few seconds at a time.  He is eating all of the same foods that his sisters eat and hasn’t gagged on textures in two months now.  He is off of formula as well as his bottle.  He is even starting to be able to put himself to sleep.  Tonight was the first time ever that I laid him down in his crib awake and he didn’t start to dry immediately.  Instead he played for awhile and then went to sleep. AMAZING!  Yesterday may have been my birthday, but I feel like today is when I’m receiving my gifts.

This blog is a work in progress and doesn’t have the bugs worked out yet, but I had to put out first post out there. It was too exciting not to. To catch you up, Danny and I decided to switch over from Caring Bridge to WordPress in 2011 since we are hoping that this year will bring with it less medical issues.  Caring Bridge was the perfect format for me to keep people updated last year as we went through our hundreds of appointments, but it doesn’t feel right now that everyone is healthy.  We are hoping this will be a way to continue to keep people posted, but also be able to highlight events in our lives that go beyond the waiting rooms.

Thank you, as always, for your continued prayers for our family and for walking this journey with us.

-Amy and Danny

Our first blog post!  We have decided to switch from Caring Bridge (http://www.caringbridge.org/visit/connorfrancisryan) to WordPress and are excited to start recording more than just the medical aspects of our lives. We hope you continue to follow us on this new site.

– Amy and Danny