Sunday, June 30, 2013

Three months old

Sorry for the delay in the post...we are remodeling the bathroom and it's been late nights working...I am hopeful to share about Jack's dedication and the beautiful morning it stay tuned!  Here is a general overview of what the past month has looked like...

On June 25th, Jack turned 3 months old.  Luke turned 2 years and 3 months and he has officially entered the world of tantrums and meltdowns.  I could feel the stares of those around me as I disciplined Luke after he darted from the elevator to the escalator while I was pushing the double stroller in the mall last week.  He is still trying to figure this new transition of having Jack in the family.  I have tried to spend one on one time with Luke because I know he is trying to do his best to adjust as we all are...along with being a toddler.  We have some sweet, tender moments but it's amazing how a meltdown can suck the energy out of you.

Well in the past month we have had a few appointments that have helped us explain some of the concerns we were having.  He did the swallow study at Children's and it was confirmed that he does aspirate.  Easiest way to explain it is that when he swallows it doesn't always go down the right 'tube' and when he aspirates it goes down his trachea and could go down into his lungs and likely cause pneumonia.  The speech pathologist that did the study told me that what we have to do is thicken his milk to a honey consistency to prevent aspiration.  After she told me this she continued to say that it was hard for her to tell me but there is not something out on the market that is safe to thicken breast milk.  The two products, thick it and simply thick it, was recently taken off the market for causing infections in infants and no longer safe.  I looked at her with disbelief.  What?  You are telling me that I can no longer give him my milk?  All I could envision was our deep freeze that is over flowing with over 3 months of frozen milk.  I had worked my tail off pumping so that if Jack wasn't still very strong at nursing (he burned more calories than he took in) that I could have enough milk for him for months after I decide to stop pumping.  My eyes filled with tears.  I had accepted the fact that I was only nursing him 1/day and the rest pumping and now she is telling me that I have to stop giving him my milk all together.  She suggested that we switch to formula and rice cereal.  I would have been fine with this decision if I hadn't put so much work into the past two months and able to give him the benefits of breast milk.  I had to believe that there were moms out there that would never give this up so I did a little research.

After a couple days of searching the internet for a safe thickener I came across Gel mix.  It's an organic thickener made from Carob bean.  I called Jack's doctor and he said he would look into it.  After doing his own research he said he couldn't recommend it because it hadn't been out very long (less than 5 years), but that he couldn't see anything wrong with it.  It's USDA approved and he could understand if I chose to use it.

So after 4 weeks on it, I can tell that he is getting stronger.  It is a process to get a bottle ready but I can tell it's helping.  With getting bigger and stronger, I am hopeful he will no longer need the thickener down the road.  A blessing in disguise with this whole thickening is that it is helping his muscles with his swallow and which I was told can help later with speech development.  We have an appointment at the U of MN next week with another speech pathologist that gives us information on more things that can help his swallowing.  It's called a feeding clinic.  When the doctor was suggesting we do speech...I kind of looked at her and was thinking...Lady, he's only 2 months old...I don't think he is going to say much right now.  She was referring to swallowing...gosh, I am learning a lot!  :)

The occupational therapist comes out 2/month and also his ECSE (early childhood special education) teacher.  The local school district provides services from birth-21 years of age and I called them when Jack was a week old.  At this age, they work on anything from neck strength, rolling, holding, supported sitting, etc.  His ECSE teacher is helpful in reaffirming his growth.  Both of them have said that he is doing great and that he is definitely strong.  They were also amazed that he was rolling over at 6 weeks!  He continues to get stronger, rolling over numerous times throughout the day, spending time on his tummy, slide line laying, and holding and grasping things.

We visited the ENT on the 13th of June.  It was a very good appointment.  Luke actually saw Dr. K for his tubes when he got them at 15 months.  He explained what he would be looking for and also what he saw from the report of the swallow study.  He said that Jack didn't aspirate that badly and that he thought that he has potential to get stronger in the 8 weeks before our follow up visit and could get back to nursing.  He had to put a scope down his nose to see about the reflux, laryngomalacia, and snoring.  He said that it was a little irritated from the reflux and that he will grow out of the laryngomalacia.  He prescribed Prevacid for the reflux and a nasal spray for the snoring.  Both of them have significantly gotten better so we are so excited to see the progress.  Dr. K has worked with many kids with Down syndrome and wants to see Jack every three months to monitor if there is fluid in his ears and check his ear drums (his ears were too small to see anything) as hearing loss can become a factor.

I have come to understand that each doctor has their recommendations but ultimately we have to make a decision on what is best for Jack.  I truly respect the doctors we have worked with so far, but I also know that unless they have worked specifically with Jack on numerous occasions, they are going off their experience and some generalizations.  I don't think I would ever have formulated this opinion two years ago with Luke.  I was a first time Mom and I just believed everything to be true and followed everything they said.  But I do believe that as parents we have a right to share our feelings if something doesn't feel right.  I left the swallow study thinking I didn't have any other option and had to make the change, and then after a day I got kind of angry.  I got frustrated and thought, I am going to see what is out there.  I asked a few other Moms what they did, what they thought, and what their advice would be.  Sometimes it's best to ask the professionals...Moms!

Some have asked how I am doing.  I think they are mostly referring emotionally.  I have had some really great days.  Jack smiles a lot which melts my heart.  He loves to cuddle his head right on my shoulder.  I will catch Luke going over to Jack and resting his head on him and giving him kisses.  It's adorable.  I am falling more in more in love with Jack and I really can tell you that he is the sweetest baby!  He rarely ever cries, if he does it sounds more like a cat's meow.  It's cute! :)  He is an amazing sleeper...I know this is such a gift...he has been sleeping for 6+ hours for the past two months. He usually goes to bed around 8:30 and wakes up around 5:30am to eat and then sleeps until about 8am.  This has all played into the emotional piece.  I don't function well on little sleep.  We have enjoyed the summer with play dates, going to the park, coloring, playing catch, hanging around the house, time outs (ugh...not fun), and swimming!  I am excited to meet and connect with a few families with kids with Down syndrome this summer too!

I have LOVED running!  Honestly, the time early in the morning, when the city is not awake yet, the sun is shining, and the quietness has been amazing.  I listen to my favorite KLOVE station on I heart radio and it's a time of worship for me.  This gives direction to my day and strength for the daily climb.

Here is one of the songs I ran to this morning...just gave me such encouragement and I hope it does for
you too!  There are times that I doubt the ability I have to be the best Mom to Luke and Jack.  I often go back and read the comments and encouragement that we got right after having Jack.  Many people expressed that we were the best parents for Jack, that things would be fine, that God chose us for him.  Sometimes those words helped me believe in me when I didn't believe in myself.  Thank you.

Remind me who I am by Jason Gray.

May we always remember who we are to Him...Beloved!

Friday, June 14, 2013

Be strong and courageous.

This Sunday we are dedicating Jack at church.  Child dedication at our church is an opportunity for Chris and I to publicly commit our desire to raise and submit Jack to God's will and raise him according to God's Word.  We have been talking about what verse we would like to choose for him and Chris shared Joshua 1:9.  After reading it again and again, I couldn't help but reflect on who Jack and Luke's Daddy is, and why he chose this verse for Jack.  

I have mentioned a few times just how strong Chris has been with everything that has gone on with Jack.  There are numerous times I find strength from my conversations with Chris.  There have been a few particular conversations that stick out to me.  One being the second day of Jack's life.  I could tell that Chris just needed to go for a run.  After almost 7 years of marriage, I know when the guy needs to run.  A few of my friends were going to be coming to the hospital and I actually told him that it was time for him to run.  (He runs 5-6 miles a day...and it's not just a's a hard run)  Later that night when the visitors had left, he told me that on his run he realized that he GETS to raise Jack.  He says to this day he knows the exact spot and house he was in front of, the point in the run where he just got this overwhelming feeling of peace and affirmation that he is so proud to have Jack as his son.  

Another conversation that I was so encouraged by was when a few coworkers willingly came over to babysit Luke and Jack so we could go on a date.  We headed out to a resteraunt and had such a great conversation.  It amazed me that through the 4 weeks of Jack's life, I had had so many conversations with others that I found myself finally checking in with him and how he was feeling.  I asked him what he envisions Jack to be like when he is older.  As thoughts of difficulties flooded my mind, my sweet husband had this comical senario in his.  He told me that he is so excited to see what Jack's personality is going to be like.  He said, "You know he is going to have a little bit of both of us in his personality and sense of humor.  I am imagining him entering the CDC (the daycare Luke goes to) and seeing the preschool teacher, Mr. F, and watching Jack extending his fist out so Mr. F could pound it."  Oh my goodness.  Are you serious?  Here I am thinking of all the help I will have to provide to Jack and my husband is across the table imagining our little guy giving fist pumps to his preschool teacher.  I love this man.  

I received an email from Chris (from work) on April 24 (one month after Jack was born) and it was regarding journal articles that Chris had been reading about research done on children with Down syndrome.  For those of you that don't know, Chris loves learning.  He just recently finished his Ph.D in Applied Kinesiology from the University of MN.  So reading journal articles excites him, and especially if it is in his area of interest.  These articles were written on Treadmill training on children with Down syndrome and their gait for walking.  Not only did he read the articles, he email Dr. Ulrich at the University of Michigan to talk about his findings and what he can do with Jack.  This email went out during the heart of the semester for both of them, finals, presentations, etc...and Dr. Ulrich called him back.  The two of them talked in their Ph.D language ;) and after 20 minutes, Chris hung up the phone with excitement of what exercises he can do with Jack.  They talked about Dr. Ulrich's latest research, on an infant's walking reflex, and how to maximize muscle contraction in Jack right now.  As a Mom, I can't tell you how much those first initial emails meant to me.  The stress lifted off of me.  To know that I am not alone in trying to help Jack be as successful as possible, to have a spouse that is just as determined (actually he is MUCH more) to defy the odds and to celebrate the accomplishments is the best gift.  I am challenged and encouraged by Chris.  

                       (Chris and Jack working hard...sorry it's sideways...didn't know how to turn it)

James 1:2-6
Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance.  Let perseverance finish its work so that you may be mature and complete, not lacking anything. If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you. But when you ask, you must believe and not doubt, because the one who doubts is like a wave of the sea, blown and tossed by the wind. 

Chris coaches hockey at the college level and the head coach and Chris meet with players frequently and talk with them about things much more important than hockey.  They talk about adversity, integrity, being men of character, their relationship with God, and so much more.  Chris said that he told Charlie that all of those meetings that they have had with players was God preparing him for a time when we received Jack's diagnosis.  Lean into it, choose joy, and praise God.    

This verse is suppose to be for Jack.  His life verse.  In a world that doesn't always accept those with disabilities, I often get discouraged thinking about how people will treat my sweet Jack.  I have to admit that the more and more I read it, I think it is a verse that I need to cling to in MY life.  It's a verse that my husband lives.  He breathes discipline and determination, in everything he does.  Through all of this, the most thing I am thankful for is my husband's love for God.  I am realizing that the reason he doesn't get terrified or discouraged is because he knows that God will be with us wherever we may go.  

With Father's day this weekend, I can't thank God enough for my husband, who is strong and courageous.  And pray that my boys grow to be just like their Daddy.  

Sunday, June 2, 2013

Two month appointment and Jogging for Jack

Psalm 46:10 Be still and know that I am God.

So I am kind of exhausted.  I had to go back to work these last two weeks of school because of insurance, but thankfully it's part time.  I know that we are blessed with a good sleeper and 9 weeks is longer than some Moms have had, but I am still tired.

We had Jack's 2 month appointment last Wednesday.  Here are Jack's stats:

*Weighed in at 9lb 8oz, 50% on Down syndrome chart
*Height is 23 1/4 inches, 80% on Down syndrome chart

There are a few concerns that I brought up which made the appointment a longer one...but no immediate trip down to Children's so that is a positive! :)  

Jack has always been a noisy eater, gulping and gasping.  He gives my heart a huge jump whenever he coughs while eating as it brings me back to his brief stay in the NICU.  Well my friend mentioned to me that he sounded like he had a condition that two of her children had.  Laryngomalacia. When she mentioned it to me I wondered if she was speaking English.  Laryngo...what?  So I had her write it down and also watched a youtube of a child displaying it, and yes...Jack has it.  So we are off to the ENT to see the severity of it.  Most children grow out of it and I am hopeful that Jack will too.  At the ENT they will also look into his snoring sleeps possibly needing a sleep study.  

Okay, so this is where I reveal again that I am kind of 'over the top' when it comes to planning/controlling or what I would define as 'setting us up for success'.  Ha...:)  I asked Jack's doctor that since reading Babies with Down syndrome and talking with other Moms of kids with Down syndrome, I became aware that they are prone to having numerous ear infections which sometimes leads to hearing loss and speech delay.  So with this knowledge I proceed to say, "Do you think after the first ear infection Jack gets, can we just go ahead with the tubes?  It was a long winter with Luke and we waited until the protocol of 3 in 3 to avoid that, knowing it's very common...can we just get the tubes right away?"  He laughed at me.  I actually think that he thought I was joking.  As I drove out of the parking lot, I kind of realized what I was asking.  It was like I was asking him for a prescription for eye glasses when he has not shown any signs of needing them but because I read a book or seen other children with Down syndrome with them...Jack must need them too.

I know I need to relax.  I know I need to understand that just because Jack has an extra chromosome, it's a syndrome and not everything that is common in a few children means that he will have it.  I know I need to trust and stop thinking that I am going to miss something that will be extremely detrimental to his development.  I still carry this weight of stress that if I don't read this book, or do this exercise, or look into this or that, he will be deprived of something.  I often have an attitude of: effort = outcome.  I know this is true in some things, but Jack has Down syndrome and I can't change who God created him to be and a lot of things I will have to rely on God for many uncertainties.  Oh how He is pruning me for totally reliance on Him.

Be still and know that I am God.

This Tuesday, June 4th, we go for a follow up on his stomach and see the GI doctor at Children's hospital.  They will look at his abdominal area again.  We then go onto the swallow test to see if he is aspirating while eating.  If he is, then we will have to thicken my milk and make an extra step to the feedings.  I am thankful to get some answers but know that things can change very quickly.  I was reminded of this when reading 47 strings author 's blog that her daughter with Ds was recently told that she has Myelodysplastic Syndrome She more than likely will need a bone marrow transplant.

These appointments are exhausting but something that is more exhausting is calling insurance when we get bills in the mail.  With a lack of sleep, I start out a conversation with the rep very calmly, but when things don't get anywhere and after 20+ minutes on the phone, I start to lose my patience.  Mostly all of the outcomes have been about a referral being needed and a lack of communication between provider and benefits...but honestly, I have gone postal on a few people.  I am tired, I am exhausted, and I am trying to find the joy in these things.

On Mother's day there was a video shown at church and it listed all types of Moms...Moms of small children, Moms of adult children, Moms that have lost children, Moms of children with special needs.  That's me.  I am now a Mom of a child with special needs.  I sometimes still ask myself if this is real.

Jogging for Jack: Gigi's Playhouse

My friend Katie and I haven't run a marathon since 2009 in which we did 3 in that year.  We desire to do so many more yet in this season of babies we haven't raced in awhile.  We just recently did a 5k as a part of a friend's 30 events for her 30th birthday.  It felt great to run again together.  So I mentioned to her that there was another run on June 8th that benefitted Gigi's playhouse.  GiGi’s Playhouses are Down syndrome awareness and educational centers that provide resources, specialized teaching, and support to individuals with Down syndrome, their families and the community.  All of the services are free and they are located all over the world.  I am thankful to have one right her in the Twin Cities.  Well here is the page she put together and I am so grateful for her love and support of such a great cause!

Hey Friends!! 
Thanks for visiting my personal fundraising page! About two months ago I was introduced to a very special boy, Jack Carroll who was born with Down syndrome. He is the second son of my good friend and sweat sister Carissa Carroll. Carissa and I have run three Marathons together, but on June 8th we will be running an even more important race! Please consider donating to my page and helping a great cause. We all really appreciate your support.

I don't know if Jack will have an interest in running...but I do know that I have an interest in him and he makes his Mama a much better runner!  I love you baby Jack and I'll jog for you always!  

Help Sponsor a Jack's Basket

About Me

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The name of this blog was inspired by Kristin Armstrong's devotional book, Strength for the Climb. I am a midwest girl married to a handsome, hardworking, God-fearing man and the mother of two boys. My eldest son, a social butterfly that has enough energy and excitement to make anyone tired and a personality that will make you giggle with laughter. My youngest son, can cuddle like no other, and his eyes will speak right to your soul. Both of my sons have taught me more about God's grace and goodness. We are blessed to have an extra chromosome in our family as our sweet Jack was diagnosed at birth with Down syndrome. With that, I am reminded daily to trust and rely on God's perfect plan on this journey called life. I am a child of God and grateful to my Heavenly Father for His continued blessings, guidance, wisdom, and most importantly for saving my soul.