Away from Home

This past weekend we went to a friends lake house at Nolin.  Kyle and I were a little apprehensive about going but we decided we would take our chances and go!  I am really glad we took the opportunity because we had a wonderful time!  There were 8 adults and 5 kids!!!

Daddy loving on his princess before we board the boat!


Reese on her 1st Boat Ride!

 
Reese and Zoe


Big Girls (Aubrey & Harper) swimming in the Lake!

Reese tried her first table food–cheesy potatoes and Loved them!  We also gave her mushed up bananas and did well with those too!  Reese’s oxygen levels were high enough that we could enjoy the day without carrying oxygen tanks around–beyond excited!  We just spent one night at the lake house and everything with Reese’s medical needs ran smoothly.  It was a wonderful time just to get away and enjoy wonderful friends and beautiful scenery!  

Thank you so much Hack Family for amazing hospitality!

“Iron sharpens iron, and one person sharpens another” Proverbs 27:17

Happy 1st Birthday Reese McClain

I can’t believe it’s already been a year–wow!  We have truly had our ups and downs this year but Reese McClain is a true blessing!


One of my absolute favorite moments and pictures with my lovie!

I know we have posted the link to her birth story before but I could truly read it over and over–I had an amazing and perfect birth!

After you’re done drying your tears from reading the sweet birth story… check out the 1st Birthday Blog post by Director of Awesome ….. Elizabeth Lauer is an amazing photographer, writer but more importantly a dear friend!

Reese had a birthday celebration week–nothing less was expected from her mother who loves celebrating Birthday’s!

Monday, July 23rd

Tuesday, July 24th

Wednesday, July 25th (Actually Birthday)

Wednesday evening we had Reese’s 12 month photos taken… then family came over for a Dairy Queen strawberry ice cream cake!  Reese had her own big girl cupcake that she wasn’t really interested in eating!  Little did we know Reese wasn’t herself on Wednesday evening because she had an ear infection that we discovered Thursday morning.  So, there is no photo for Thursday because she was getting lots and lots of beauty rest and love to prepare for her big party!

Friday, July 27th
Thank you Auntie Tina for the most precious outfit!

Then came Reese’s big day where she invited all her family and friends!  I couldn’t have asked for better weather–it was truly amazing because Reese was able to go outside for a little while without oxygen!  Reese was also feeling much better from her ear infection and had tons of smiles to give to her family and friends!  Daddy was under the weather but made an appearance–he was a trooper because he was really sick.  Overall, we had an amazing time and confirmed that we are beyond blessed with people that love our family so much!


Invitations designed by Elizabeth Lauer–Lizzie Loo Photography.

Between severe reflux, hospital visits, oxygen–it was a little stressful getting a photo of Reese each month but totally worth it in the end–I will cherish these photos forever!  Also, I chose not to make a traditional baby book because honestly it made me sad that Reese wasn’t meeting the milestones it noted.  Elizabeth is going to design us a very special book with these pictures and many more–no worries instead of the traditional baby book!  I think it’s a brilliant idea and really captures Reese’s precious little expressions that melts her mommy and daddy’s hearts!

Birthday Girl in her pink highchair!


Reese was so blessed with so many cards!!!

Melissa Tindle–Kyle’s cousin was so wonderful to capture Reese’s 1st Birthday Party!  Melissa did an amazing job and I just adore these photos–you really should check out her work!


Thank you so much–KBJ Photography!

Other Credits:
Elizabeth & Reese’s headbands were crafted by Jessica Farmer–Bluebirdheaven
Reese’s Outfit–DolceMia Clothing
Reese’s Alterations by Janice Becker–Nini’s Creations
Cupcake–Kroger
Highchair–Goodwill and a pink paint job by Reese’s Mimi Mem

Lastly, we asked for donations for a young man by the name of Glenn who also has a rare chromosome disorder in lieu of gifts.  The community is raising money to get Glenn’s mother a wheelchair accessible van.  Reese McClain was able to raise $1,300!  I was so humbled by everyone’s generosity and willingness to help another family!

Discharged

Reese and I had a good girls night even though she tossed and turned all night, a bright monitor stayed on displaying her brain waves and I couldn’t get to sleep–we are good!

My little lovie was so ready to go to bed but I couldn’t give her a bottle because we were waiting for respiratory therapy and medicines.  This is where Reese gets a breathing treatment to open her airways in her lungs, then a machine that thumps on her chest/back to break up the fluid and topped off with suctioning.  Last night they did deep suctioning which is extremely hard for me to handle because Reese screams bloody murder… and if you knew Reese–she is not a crier.  I held her arm and leg down and just kept my eyes shut telling her it would be ok… mommy was right there for her…and praying to God to comfort us both!

Equipment we use every morning and night at home:

Nebulizer–medicine that she breaths in to open airways
Approximately 10 minutes each time


The Vest or as we called it “Thumper” 
Of course, Reese has the pink vest but her machine is just white!
Approximately 20 minutes each time

Suction machine to get the fluid out–just a minute or so (additional uses as needed)

This is when she was patiently waiting for breathing treatment, medicine and night time bottle!

THEN after an hour and half of waiting I had a lion on my hands–pretty cute lion though!

I had asked and asked regarding all these things and I finally did what any mommy would do, I gave her a bottle!  After her bottle, the respiratory therapist came and I told them sorry you’ll have to come back we couldn’t wait any longer.  You need to wait at least 1 hour after eating because the chest/back compression could cause them to throw up.

We finally got some rest and Reese went home as planned today!  The neurologist looked at the points in which I marked with a button during the observation and said she did not see any seizure activity.  However, they have to read the whole observation and we will get those results in two weeks. So still praying for results to show no seizure activity!  The doctor believes that Reese makes the little jester when she gets excited and it’s a muscle type of response and should not be alarming!

We also got our heart surgery date today–August 29th!  We have been waiting for these dates since May!  This surgery is routine for “normal healthy babies”… but Reese is at a greater risk due to her condition.  We know the risk but pray that the outcome is greater than any risk.  If you will please pray for peace/comfort for me,  I’m having a hard time accepting all this again.  It’s like sometimes I take 5 huge steps forward and then there are days I feel like I’m taking 10 huge steps backwards!  Reese will be cut down her whole chest… she will never care about the scar but it’s just something else that will visually remind me my child isn’t perfect.  Silly I know.. but if you have a child you understand and if you don’t you will one day–trust me!  I know many of you don’t know what to say or do with all this going on with Reese but prayers for peace for me would be amazing!  I know without a doubt that…”I praise him because Reese is fearfully and wonderfully made” but that doesn’t make my tears stop flowing sometimes because I grieve wanting to have the “normal” life/routine with a baby.  I truly appreciate your prayers and faith in our father who loves us so unconditionally–even when someone like me has doubts or bad days.

“For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us” Romans 8:18

Girls Night

Reese and mommy are currently at Kosair’s Children’s Hospital for a 24 hour observation with neurology.  When Reese get’s really excited she does an “odd” activity with her eyes/hands… not really sure how else to explain the activity.  Neurology (Dr. Puri) just want to rule out any possibility of seizure activity.  The research that has been presented to us and that we have read ourselves is really 50/50 whether or not children with XQ28 duplication have seizures.  Generally, if they do–they will develop when the child is somewhat older–not fitting the 1 year old profile of Reese.  However, we just want to rule out the possibility and praying for a good report!  Therefore, Reese and I have decided this is girls night!

On our way for observation (1st time in my Big Girl Seat)

I was so worn out after they wrapped my head up like a football player!

Of course, I woke up after mommy laid me down!

Let Girls Night begin!

We know God is in control of the outcome and we praise him for today and for our precious gift–Reese McClain Nichols!

And my God will meet your needs according to the riches of his glory in Christ Jesus–Philippians 4:19

Meeting Needs

When I found out that Reese had XQ28 duplication I researched extensively just trying to find answer and hope.  Kyle actually came across the blog www.annaandessie.com and we felt like we had finally found someone who could shed some light on our journey.  My mom was the one who finally emailed Laura and asked her to email me for support. Laura is an amazing mother of 2 beautiful little girls: Anna (who has XQ28 duplication) and Essie.  I share their blog so that you may also get to know Laura, Anna and Essie.  It was during that “dark” time where I needed all the help I could get and Laura came along beside me by sharing the things that Anna does and the timing of those things. However, all children with genetic disorders may or may not progress the same but it still brings comfort to know that someone else has a story and is willing to share and encourage mommy’s like me.

So, what is Reese doing…



Puts weight in her legs
Will stand with her arms on my knees for a minute to 2 minutes
Rolls over well from back to belly, belly to back
Pushes up when on belly thru arms for seconds–working for a longer time frame
Can sit unassisted for 15-20 minutes (however, doesn’t catch herself going backwards yet)
Reaches for toys
Holds toys
Brings toy to mouth
Coos all the time
Smiles at herself in the mirror
Starting to have some separation anxiety with daddy–which we love
Eating stage 2 baby food and some stage 3

Reese Loves..

To have books read to her
Have her mommy put her to bed
Kisses and hugs from anyone
Cuddles in the morning before we do anything else–LOVE, LOVE this
Swing–her Papaw got her this swing and it’s her favorite thing to do!
Watch Baby Einstein but only for 20 minutes at a time then it’s over
Go strolling when the weather isn’t too hot

Who’s involved in Reese’s care:

Weisskopf Center – (Genetics Doctor)–yearly now unless we have questions
Pulmonologist (Lung Doctor)
Cardiologist (Heart Doctor)
Neurologist (Brain Doctor)
Pediatrician
Physical/Occupational/Speech therapists
Sproutlings–Medical Fragile Daycare
Julie Lanham–AMAZING sitter

We have been blessed with the people in our lives that provide words of encouragement and excellent care for Reese.  God’s people are good!

and my God will meet all your needs according to his riches of his glory in Christ Jesus–Philippians 4:19

Genetics

I’m going to try my very best to explain Reese’s chromosome disorder in technical terms. I never imagined that I would have to understand/study genetics and for the record it’s very complex! However, after having genetic counseling I feel that I have an understanding for what happened with Reese. All normal females have (2) X chromosomes and 1 of them go inactive–that did happened in Reese. [I’m using the word “normal” because it’s simply the word geneticists use] However, the problem occurred when there was a little extra X chromosome duplicated (created). That extra X chromosome than “trans located” to the number 2 chromosome. From our genetic counseling session”trans location” of a chromosome is worse than no chromosome moving around in the genetic makeup–if that makes sense. The extra X chromosome then deleted a little bit of the number 2 chromosome which actually would have not caused any issues. The issue lays with that extra X chromosome “trans locating” to another chromosome–creating XQ28 duplication.

Here is one of the medical documents on XQ28 Duplication:
http://www.rarechromo.org/information/Chromosome_X/Xq28%20duplications%20FTNW.pdf

Now, in my previous post “Rebuilding” I mentioned why I think this happened… there is a technical reason too. Reese’s genetic makeup happened during conception. There is nothing that Kyle or I did to our bodies to cause this mutation. Gosh, I hate that word–mutation but that’s the reality of truly explaining what happened. So, I’ve been asked–Can it be fixed? That question doesn’t upset me because honestly before this happened to us–I may have not really been aware of how a genetic disorder truly effects someone. The answer is NO it cannot be “fixed” but we can provide Reese with the absolute best opportunities for her to achieve her full potential.

Many have asked… what about future children! Wow, how my plans have changed. I was hoping to have my next child 18-22 months from Reese but did you noticed the sentence began with “I” not God. So, I’m not sure what God’s plans our for the Nichols’ Family but I know he will never forsake us and he is always FAITHFUL! Lamentations 3:22-23 (for his compassions never FAIL) 1 Corinthians 1:9 (God is faithful) Now some know but not many–Kyle and I had to have the genetic testing done in order to know if this could occur again in future children. This was another one of those tough things… that I just didn’t like to touch. It took me a while to actually just go get the testing done. Why? The “Unknown”–mostly the devil likes to make your mind his playground when you’re dealing with a lot of unknowns. So, I really had to put on my armor to fight this spiritual warfare that was occurring regarding the testing….

If I was the carrier… my thoughts: I caused this for my daughter (that’s heavy burden to carry), I won’t biologically have other children (that’s hard to think “you” don’t get to choose that option)… the list goes on and on but those are the two main thoughts I had…

Well, it turns out that Kyle and I are NOT carriers or have any abnormal chromosomes that caused Reese’s mutation. Yes, Praise God!

However, when I received the news yesterday… I have to be honest… tons of different emotions started to overflow my body. Yes, I’m happy but I guess I truly thought I may have been the carrier. I feel that I would have known for sure “why” it happened but actually this takes us right back to God. As I sit here and type–tears are just flowing because I know without a doubt God made Reese just the way she is… and did it for a reason. A reason that is hard for me to understand at times because I’m not amazing, I’m not strong… I am only these things thru Christ who strengthens me each day (Philippians 4:13). I so appreciate everyone’s sweet comments that I’m amazing but the truth is that I’m not–it is only thru the Holy Spirit that fills me that I can do for Reese as God wants me to do. The conclusion of how this happened in scientific world–spontaneous.

After reading several definitions for the word spontaneous–I will go with: produced by natural process.

Now, you know I asked for more information regarding future children and the statistical outcome of genetic issues. It is less than 1% that XQ28 duplication would happen. There are several test that can be done during pregnancy to determine if that child would have XQ28 duplication but we would not elect for those tests. However, when the child is born they would automatically test for XQ28 duplication with all the other normal standard testing.

There is another avenue that we have thought about/prayed about for a long time–adoption.

So, where will God lead our family–I have no idea at this time… but I do know I will give it to him and he will be our guide!

The LORD will guide you always; he will satisfy your needs in a sun-scorched land and will strengthen your frame. You will be like a well-watered garden, like a spring whose waters never fail. Isaiah 58:11

Benefit Concert for Jamie Andriot

Makin’ Music, Makin’ Waves

Shelbyville Amphitheater at Clear Creek Park
717 Burks Branch Road
Shelbyville, KY 40065

TOMORROW: July 21, 2012
1:30pm-11:00pm

Enjoy various local bands, with New Breed headlining the event. There will be a live and silent auction with some great items! Food, drinks and fun! ALL proceeds will go straight to Jamie Andriot for her and her family to use as needed.

Jamie sister Julie, is the amazing sitter we are so blessed to have for Reese.  Jamie’s daughter Mya is also at Julie’s during the week.  Therefore, Reese and Mya have gotten to become sweetest of friends.  Mya is just the most adorable little girl you’ll ever meet.  Jamie is an amazing mother and a beautiful woman!  If you are unable to attend this benefit I would be happy to coordinate getting your donation to the Andriot family.

Mya and Reese

Rebuilding

At 6 months old I knew for sure something just wasn’t right with Reese’s development. Our pediatrician referred us to Associates in Pediatric Therapy for evaluations in February and that’s when my emotional roller coaster began! I begged the therapist to give me answers and they simply told me they were not an MD and we would need to see a neurologist but Reese did indeed have developmental delays. I cannot tell you the amount of time I spent on google trying to figure out what exactly was going on with Reese. Boy was that horrible…I would find something and just cry, cry and just be angry about the whole situation. We couldn’t get into see a neurologist until June and I thought I was going to drive myself crazy with the unknown. Long story short–Reese got sick February 27th and as soon as she was admitted into Kosair I begged to see a neurologist. I think they sent Dr. Puri to shut the crazy lady up–that’s ok though 🙂 Dr. Puri talked to Reese and checked her out… when he was done he had us sit down to talk to us and I almost passed out when he was telling me there were developmental delays… it just was too much coming from the doctor…. I was hoping it was something she could “grow” out of… They did all kinds of test on Reese to check for seizures, etc… at this time she doesn’t have seizures but we will be having an overnight stay in August to check again. They also did the genetic testing as Kyle explained previously….

I will never forget the night Dr. Puri called–March 23rd @ 6:30pm. I knew when I saw him calling it could not be good–what doctor calls you on a Friday evening… I remember him clearly saying “Reese’s genetic testing came back with a significant finding. She has XQ28 duplication–I’m sorry”. Have you ever had a moment where you felt like you couldn’t breathe and your body felt extremely weak–that was how I felt. I could only think of one question to ask–“Is it fatal”? Dr. Puri told us no and tried to explain it but continued to tell us it’s extremely rare in girls. That is when the breaking of my heart began…

For those that may not know me… I am what you would describe as a Type-A personality, OCD, obsessive compulsive or as one professor in graduate school said, “anal retentive”–it’s OK I know it–I’ve lived with myself for 29 years. Therefore, I had a plan and having a special needs child was not part of my plan. Have you ever felt like life has stopped and you could really careless what is going on around you… that is how I felt. I describe this part of my life very dark, sad but mostly angry with God. I would cry out to him “Why my Reesie girl, God, why?” in my car, in my bathroom, in the parking lot of Kroger, at work in my office, outside my condo… over and over I would shake my hand at God and cry out “Why my Reesie girl, God, why”? I would lay in bed some days thinking how could I possibly put my two feet on the ground and start walking–especially when my feet felt like bricks. I would let Kyle get up with Reese and take care of her while I laid in bed crying…. my heart was broken and my dreams for my family were crushed. I would go to the baby showers–run home and cry. I would go to work and come home to hold Reese and cry. I was one big crying mess! I can honestly say I know what the deepest sadness you could possible feel because I was grieving the loss of having a “normal” child. Yes, grieving.

It is when I finally ask God to put his hand on me, give me new mercy and grace everyday that my heart began to be “rebuilt”.

Now, it’s very important that you are aware that I did not get to this point on my own… O’ no… that would have NEVER happened. My husband, my mother, a best childhood friend and my two best shelbyville friends were instrumental in getting me to this point–not to mention just all the love and support I had from other family, friends and the shelbyville community. However, those 5 people saw me cry, saw my shout and just continued to pour their love and the word into me. My heart could not have been rebuilt without them.

I have people ask me, so why did this happen? I believe it happen for several reasons and some that are just not apparent yet. I believe that God had plans to mold me into the woman he wants me to become… by breaking my heart and rebuilding it according to his plans. I have learned that Reese is not my child–Reese is God’s child and a “gift” to me. God has allowed for me to have Reese and to care for her and that is such an amazing privilege. I have learned that life is not about “me” it is to glorify God. I have learned that God sees Reese McClain as perfect and whole. I truly believe the real beauty of why has yet to come… I think Reese has a story to tell and is already doing so thru smiling all the time. There are times when Reese is really sick and just smiling at the doctors–it blows their minds because you just can’t image that sweet smiley little girl is really sick.

I am not perfect–never will be but I’m starting to accept the new “normal” for Reese. As my heart is being rebuilt–amazing things are happening and the emotional roller coaster is coming to an end. I do have expectations for her but they have changed to meet Reese and not what I thought had to be met before… I now celebrate her accomplishments with her instead of being resentful to God. I speak the truth over her and pray for completely healing as God has planned. If she isn’t healed on earth–I know she will run to me when open arms in heaven and say “I love you mommy–you are my best friend” and that folks right there keeps me thanking God for the opportunity to serve him by loving my daughter just as she is…. Reese McClain is “Made in HIS image” Genesis 1:27.