Wednesday, December 26, 2012

Merry Christmas and a Blessed New Year!

We had the privilege of dedicating Aerin to the Lord on December 23. It was a wonderful way to kick start our Christmas celebrations and we'd love to share it with you. We hope that you had a wonderful Christmas and that you would know the love, the peace and the mercy of the Lord in 2013.


(The video is embedded here, but I think it works better to view it in Youtube.)

Friday, November 30, 2012

Letting Go

Letting Go
As children bring their broken toys
with tears for us to mend,
I brought my broken dreams to God,
because He is my friend.

But then instead of leaving Him
in peace to work alone,
I hung around and tried to help
with ways that were my own.

At last I snatched them back and cried,
"How could you be so slow?"
"My child," He said, "what could I do?
You never did let go."

This little poem came to mind this week, dredged up from some foggy corner of my sleep deprived mind, and reminded me of how the Lord’s best work in my life comes when I let go and allow Him to turn my messes into miracles. Since Aerin was born, my mind has raced from one problem to another, wondering how I would fix it, fight it off, minimize it, manipulate it, or make it happen. And the deeper I got my hands into everything, the harder and the messier it got. This is deliberately vague, forgive me, but suffice it to say that we’ve had some pressing needs snowball lately and were desperately seeking some answers.

Finally, this past week, I came to the end of myself and dumped everything in my Father’s lap with a rush of tears. I was broken and hurt and worried and overwhelmed and I just couldn’t spin my wheels any longer. Aerin’s diagnosis has come bundled with a slew of physical, emotional and financial baggage that had weighed me down so much that many days, I struggled to lift my eyes. And therein lies the great tragedy: He would gladly have taken my burden from me at any time, but I clung to it as the child who will not relinquish the broken toy. And with my tear-filled eyes fixed firmly on the broken toy, and not on the Father who wanted to make it right, I wasted precious time and energy.

Once I let everything go, the Lord was able to start His work, which is so much more glorious than mine anyway. And prayers have been answered, in wonderful and mysterious ways, and blessings have rained down upon us. Or maybe they were there all along, I just couldn’t see them for my stubborn blindness. Please don’t misunderstand--my problems have not disappeared. But they are in His hands, where they belong and where they have settled into their proper place and priority. Now, I work to resist the temptation to snatch them back, o foolish flesh that I am.

Be merciful to me, O God, be merciful to me!
For my soul trusts in You;
And in the shadow of Your wings I will make my refuge,
Until these calamities have passed by.
I will cry out to God Most High,
To God who performs all things for me.
He shall send from heaven and save me;
He reproaches the one who would swallow me up. Selah
God shall send forth His mercy and His truth.

Psalm 57:1-3




Friday, November 23, 2012

Black Friday


I had it in my mind to write up this great post on how Thanksgiving came and served to reinforce the sense of gratitude that has bloomed (sometimes through disciplined care) in the face of this hardship. But it just didn't happen that way.

I remember the first night after receiving Aerin's diagnosis; I rocked with her in the NICU, heavy with grief. The grief came in great waves that night, rolling over me with each new realization of what having PWS meant for her and for me and for my marriage and for my family. It may seem silly, but one of the things I grieved was the holidays. There is a palpable pleasure from gathering with loved ones over a good meal, enjoying it together and lingering over it, long past feeling full. Now, those treasured days feel like enemies and the loss is profound.

I find that most days, I can keep the fears and grief regarding “The Hunger” at bay. With the Lord's help, I try to keep my eyes on Him and what He has called me to for just that day. But yesterday, I was drowning in sorrow, fear and desperation. Thanksgiving has always been my favorite holiday but yesterday it mocked me with its resplendent meal and the haunting shadows of things to come.

It just hurt so much.

So, I wake up to Black Friday—which has taken on a new meaning altogether for me as well—and I start another day of disciplined thankfulness because today, it just doesn't come naturally. My flesh cries out to be bitter and heartbroken today. But, ever so gently, the Lord shows me that I still have so much to be thankful for. There is much more in my life (and in Aerin's) that is whole than is broken. And our future is still one of hope. We hope for better treatments, we hope that the severity of PWS in Aerin's life is minimalized, and we hope for a cure. But what I cling to most is NOT hope. It is the assurance that, one day, the raging hunger that lives inside all of us—the hunger for something, or anything, to fill this giant tear in the fabric of our hearts—will be healed. Not on this side of heaven, but somewhere on the other side of the veil, He alone will satisfy that hunger and heal all of us for all time.

“Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So, we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary but what is unseen is eternal.” 2 Corinthians 4:16-18

***

Aerin was a little under the weather yesterday, so I didn't get many good "First Thanksgiving" pictures. But I did get a precious one of her with her wonderful big sister!


Wednesday, October 17, 2012

Thankful


I have sat down to write an update several times and each time I have had to abandon my mission for some pressing matter or another. Well, today I am determined to get something up on this blog!

Aerin is just a few days shy of her 7 month birthday and we have come so far. I think back to those dark days in the NICU where we didn't know what was wrong and we prayed fervently that it not be something that would take her from us (at the time, she was being tested for Spinal Muscular Atrophy which is a devastating condition where children seldom live past the age of 2). And then we got her diagnosis of Prader Willi Syndrome and while we rejoiced that it was not something degenerative, it certainly came with a degree of grief and loss.

And it occurs to me now that the Lord had been preparing us for this. Prior to having Aerin, I suffered a very difficult time of post-partum depression with the birth of my son and then two miscarriages. All three instances were valleys that He led me through where I learned to lean into Him when the pain was great and the darkness so dense that I feared I would never again see light. He knew what was coming and that it would be the hardest, deepest valley of all and that I needed to be ready for it.


After the second miscarriage, I came across the book One Thousand Gifts by Ann Voskamp. It is a beautifully written book about learning how to cultivate a spirit of gratitude in all the seasons of life. It taught me that being thankful is a spiritual discipline in which I choose daily to draw closer to the Lord by seeing His hand in all things. Even in pain, in heartache, in loss, in grief, in despair and in bleakness, He is there. And He is King over all of it so that I don't have to be. I knew, after those first days where all I could see was what we had lost, that I still had the choice to be grateful for, and in the midst of, PWS.

It started off by choosing to be thankful that, while our life with Aerin would look radically different from anything we had imagined, she would be with us. She would grow (at her own pace) and we would be able to watch her blossom like we have done with our other children. Then it was choosing to be thankful for each milestone reached—each bottle completed without the feeding tube, each swat of an otherwise lifeless hand, each hard-fought smile was a joy to be counted as gain. Then it was choosing to be thankful for our family and our friends who all have stepped up to love Aerin, and us, and to be the hands and feet of Jesus to a family very much in need.

From there the list of reasons to be thankful in the face of this rare genetic disorder just multiplied.

Augie and I celebrated our 11th wedding anniversary on October 6th. We had a brief moment to sit down and really look at each other. And I saw my best friend, my husband and the father of my children in a whole new light. He didn't choose this (none of us did) but he has not backed down from it for an instant. He has become my hero in every sense of the word. And that's when I realized that, in sending us Aerin, God has truly saved us.


We have always struggled with finding the Lord's purpose for our lives, for our marriage and for our family. We are too easily distracted by the world and would often find ourselves veering down every possible byway imaginable. But then He put Aerin right in the middle of our lives and said, “Here is this gift that will always remind you to look towards Me, to live in Me, to trust in Me, to glorify Me, and to love Me above all things. She is precious and unique and she will force you into a life of disciplined love and trust that will make you infinitely more like Christ. She will make you better lovers, better friends, better parents, better human beings. She will make you stronger, braver, more hopeful, more faith-filled and more loving. I and my Son will use her to bring Us glory by growing your hearts and breaking you out of the prison of selfishness that you were trapped in. She, and her genetic deletion, are our gift to you. It will not always be easy but, in the end, it will definitely be worth it.”

And so here we are. Our gift is alive and well and growing. And we are, we are, so very thankful.



Thanks be to God for His indescribable gift!
2 Corinthians 9:15 (NKJV)

Thursday, August 30, 2012

Sweet Sounds

This past Monday, we went to see Dr. Miller up at Shands in Gainesville. Dr. Miller is Aerin's endocrinologist and is truly a stellar example of how doctors should practice medicine. It is obvious that she has a real heart for her patients, some 500 babies, children and adults with Prader Willi Syndrome. She was thrilled to see how much Aerin had grown and celebrated all of her achievements with us in such a way that we could tell that Aerin was almost as much "hers" as she is "ours". To have a doctor that is so much invested in your child's future is priceless.

We talked about starting solids soon (ack!) and getting going on more aggressive speech therapy since Aerin hadn't started babbling yet. It is one of the strangest features of this syndrome, this near silence. I set my alarm each night to wake up for feedings and have to crank up the baby monitors to hear her shuffling in bed when she wakes up from a nap because she makes no noise otherwise.

Speech delays are a common issue in PWS. Many children develop speech apraxia and remain nonverbal for a long time.  It is another hurdle that we face, not knowing if it will affect Aerin or how severe it might be.

And, as always, the Lord met us at that place of fear, hesitation and uncertainty. The next day she spent "talking" her little heart out! It's so precious to see her trying out her lips and cheeks, working against the low tone that weighs her every muscle down to form sound. When she watches us now, she intently watches our mouths as if to crack the code.

I'm just so proud of her, I could burst!






Wednesday, August 15, 2012

Rock 'n Roll

This week started out really ROCKy. I've just been struggling so much with Aerin's developmental delays that it's really been weighing me down. My head knows that this is par for the course with PWS, but my heart just breaks over and over again for her sweet, frail little body. One of the key features of PWS  is hypotonia, or low muscle tone. I find that this is a really hard concept to understand, especially as it's not as simple as "her muscles are weak". I found this great article on what it means to have low muscle tone and the PT who wrote it was able to describe it within the context of us regular-toned folks:

Muscle tone is the resting state of your muscles.  When a child has low muscle tone it means that they need to put a lot more energy into getting their muscles to turn on to do what they want them to do.  I often try to explain this to parents by describing that feeling when you finally get to sink into the couch or your favorite arm chair and relax and then someone calls you from the other room and you have to rev up the energy to get up.  Think about having to do that every time you move because that’s what it can be like for kiddos who have low tone.

Basically, having low muscle tone means that Aerin has to work at least twice as hard as everyone else to complete even the most basic of movements. Aerin has what is called a "global delay," meaning (among other things) that she is very late in meeting her milestones. She is weakest in her trunk and upper extremities, which is why she still can't lift her head at 4.5 months or raise her arms to swat at or grab at a toy. Her lower body is stronger--in fact, she's got quite a kick and I can't wait until she can swim, she'll knock it out of the park.

It's just so very hard not to compare her to other sweet babies and, at those times, the discouragement is so very tangible it hurts.

But, as always, when there is a question God is prepared with His answer. Our answer came in the form of our physical therapist. We've been seeing her regularly for a couple of weeks now and she is very sweet with Aerin and very encouraging to me. She is very proactive and we are already getting Aerin a pair of hip helpers to address Aerin's severe hip abduction (i.e. her legs splay outward like a frog when she is laying down and this can lead to several problems later, not the least of which is hip displasia). We are going to order a set of bamboo braces to help support Aerin as she learns to push up on her hands while on her tummy. And she is going to start investigating whether or not a spio suit will help give Aerin more proprioceptive feedback all over her body, thus encouraging her muscles to engage and work more. And these are just the various orthoses that are in her plan to help Aerin reach those milestones in a more timely manner. She also has established a thorough program of "exercises" that we do with her each day to help push Aerin towards her full, ever-blossoming potential.

So, we are getting there. Slowly but surely. I have to constantly remember that Aerin is on her own timeline and no one else's. It's not fair to her for me to constantly be comparing her to others when she is marching right along to the beat of her own little drum. The Lord has made a way for my daughter and she will follow it on His and her terms, not mine or the world's.

All of that being said...today Aerin ROLLed over for the first time! We put her on her tummy this morning for some tummy time and she just plain decided that she wasn't gonna have it, so she just popped herself right back over to her back where she was just fine, thank you very much. Yes! She ROLLed!

It's just like my Lord to ROLL away the ROCK I find myself facing. <3

Enjoy!





Thursday, August 9, 2012

We're still here!

Well, it has been eons since my last post. I'm starting to think that blogging will be a lot like journaling for me--bejeweled with great intentions that are not often seen through to completion!

We have survived the summer! I remember when we finally came home from the hospital: I was pumping 8 times a day, we were bottle and tube feeding Aerin, running off to countless doctor and therapy appointments, and my two big kids needed TONS of love and attention. I had no idea how we were going to manage with daddy working 12 hour shifts! Well, needless to say, we watched a lot of tv this summer and were very blessed by many friends who hosted all of the playdates that kept the four walls of our house from closing in on us. School started on Wednesday which provides a measure of relief from the craziness for all of us--especially since we are blessed with a wonderful school family and great teachers.

Aerin is doing so well. We haven't used her G-tube for a feeding in 21 days (and prior to that it had only been twice in 14 days--so I am totally counting those two weeks as well)! Honestly, we didn't know what to expect when we brought her home and thought it would be many, many months before we would reach this milestone. The Lord is so faithful!



She is a busy little beaver. Since my last update, she had a baseline EEG that showed some slowing of the brain waves on the back of her brain. This is the same area where she had excess fluid on her brain immediately after birth. Her neurologist opted to do a CT scan to follow up on this and the original MRI done in the NICU. The CT scan showed that Aerin has enlarged first and third ventricles, probably from that excess fluid, and we are going to just watch her carefully over her first year to make sure that it does not progress into hydrocephalus. Typically this is a symptom that is outgrown by the age of one--definitely the outcome we are praying for.



She has physical therapy 2-3 times per week and oral motor therapy every other week. We have been blessed, again, with wonderful therapists. They are all very much in Aerin's corner, pushing her towards her potential and cheering her on. Physical therapy is the hardest right now (for me) since she still has a significant delay in her gross motor skills. Never before have I realized how much I took for granted with K & A. Aerin works so hard to do the most basic things: kick her legs, raise her arms, lift her head. She has definitely gotten stronger, but she still has so far to go and I can't help but feel a little overwhelmed and discouraged at times.



One of the unfortunate side effects of her gross motor delays has been developing plagiocephaly, or flat spots, on her head. We are in the process of adding yet another doctor to our "Team Aerin"--a neurosurgeon who will evaluate her to see if she is a candidate for a helmet to help reshape her head before her skull finally fuses and hardens. In the grand scheme of things, this is relatively minor. But it feels a little like a blow to our forward progress as it is yet another issue we have to tackle.

Having Aerin is like being in an Olympic training program for mental self-discipline. I am constantly having to fix my thoughts on those things which are "...true, and honorable, and right and pure and lovely and admirable." (Philippians 4:8) All of the dark, discouraging and frightening thoughts hover perilously close to my heart and it is a constant battle to keep them at bay. I admit that this was a hard week for that and I have spent more than my fair share of time in tears.

But, I come back to the line of my favorite Matt Redman song (for now anyways):

You're rich in love and you're slow to anger
You're name is great and you're heart is kind
For all your goodness I will keep on singing
10,000 reasons for my heart to find.
(from 10,000 Reasons)

And I know that I always, ALWAYS have 10,000 reasons to rejoice.

On that note, I'll leave you with a little video of my sweet girl and her giggle...








Monday, July 2, 2012

So many firsts...

Since I last posted (and it's been ages--I know), we have experienced many "firsts" with our sweet girl.

June 4: Firth completed bottle!



June 11: First Growth Hormone shot (and every day since)!


June 17: First Father's Day with the best daddy ever!



June 28: First EEG (note the post-EEG hairdo)!




July 1: First day without any tube feedings (5 feedings completely on her own!)!!!





July 2: First laugh!


Yes, she laughed! We were putting big sister to bed when she just belted out this big, short giggle. It was so sweet! We got about 5 more out of her before she passed out cold. And I cried. Tears of pure joy because I know just how precious those little sounds are.

God is SO good.














Saturday, June 2, 2012

And we know that in all things God works for the good of those who love Him...even Pitocin.


Our visit to Dr. Miller (the endocrinologist at Shands that specializes in PWS) was full of all kinds of wonderful information and encouragement, but one little tidbit stands out far and above all of the rest. One of the first questions she asked, after walking in, washing her hands and scooping Aerin up to cuddle with and love on, was how my labor and delivery went. I told her I was induced, to which we replied with a hearty “That’s great!”

Really? Great? I’m thinking...not so much.

So rewind a couple of months with me to March 21st. I was 38 weeks on the dot that day and my OB wanted to induce because Aerin’s heartbeat had mysteriously dropped at my last NST. An ultrasound showed everything looked fine, but she wanted to go ahead and get her out and I was not one to argue. (Because of the polyhydramnios, I had carried around 40 weeks worth of amniotic fluid for the last 2-3 weeks of my pregnancy and I was exhausted.) After all, I had been induced with my son: Check in, get IV, start pitocin, get epidural, deliver baby. Easy peasy, lemon squeezy--as my daughter would say.

I checked in to the hospital at 7:00 am, had my IV put in and started up on the pitocin. Pitocin is that wonderful synthetic hormone that, among other things, starts contractions. Sharp, ugly, miserable contractions...but contractions that get the job done, nonetheless. For some reason, my nurse would not let me get an epidural until I was 4 centimeters dilated and I was dilating at a snail’s pace. So I sat there, with my pitocin drip, contracting my little heart out all day long and waiting to hit the epidural lottery. Not so easy, lemon squeezy.

We can Reader’s Digest the rest: I finally got the epidural at around 7 pm but by then it was too late. It didn’t work and Aerin was born at 9:19, amidst a great deal of noise on my part.

So fast forward again to last Monday when I am standing in Dr. Miller’s office wondering why the most painful day of my life would ever be referred to as “great”! Here’s why...

Pitocin is the synthetic form of Oxytocin, a hormone produced by the body that plays a large role in bonding, social recognition and empathy. It is often referred to as the “love hormone.” It is thought, Dr. Miller explained, that those with PWS do not produce enough oxytocin on their own. At birth this impacts a baby’s ability to have those crucial early bonding experiences that can affect social interaction for the rest of that child’s life. The fact that I was induced meant that Aerin received Pitocin in utero and reaped many of the benefits of the hormone from the moment she was laid on my chest and encircled in my arms.

Honestly, I missed the next few minutes of our conversation with Dr. Miller because my whole world had just stopped. It was as if Jesus was standing right beside me in that doctor’s office and whispering into my ear, “See? I ordained this. You may not understand it, but I do. And I am in control of it so you need not fear.”

It was simply amazing to think that the Lord had planned out my labor and delivery in such a way that Aerin would reap as many benefits from it as possible. Something that I, in the moment, saw as a painful trial was really the Lord working for the good of my daughter. And I LOVE Him for it.

Some might ask, “Why wouldn’t He have just healed her to begin with?” Well, I think I am meant to work out the answer to that over the rest of my life, trusting that the answer will be clear once I have joined my Father in heaven. Certainly, it is a question for another post. ;) One thing I know for certain: had Aerin NOT been born with PWS, I would never have heard His still, small voice speak right into my heart that day in the doctor’s office. And I would be much worse off for it.

And we know that in all things God works for the good of those who love him, who have been called according to his purpose. Romans 8:28


P.S. Thanks, Jessica, for the post title! You are a dear sister in Christ!

Tuesday, May 29, 2012

Riding the Roller Coaster


Well, its been a couple of weeks since I last posted and after this post, I think you’ll understand why. Since writing last, we have ticked the following off of our “to do” list:

1. Visited Aerin’s pulmonologist and gastroenterologist in Orlando. Her pulmonologist is actually treating another patient with PWS so he was on the ball with everything that Aerin needed. He ordered her baseline sleep study and explained that we will keep her on the apnea monitor for at least 4-6 months while she starts the growth hormone. The GI doctor was wonderful as well, even if she doesn’t have any PWS experience. She looked at Aerin’s stoma, cauterized the site so it would no longer form granulation tissue and set some volume guidelines for the next couple of months. 



2. Received our Family Service Coordinator for Early Steps and set an evaluation date. I met with our Family Service Coordinator to do Aerin’s work-up and sign all of the papers. She was very kind and I am so thankful that she seems very easy to communicate with.



3. Had a physical therapy and speech evaluation to start therapies while waiting for Early Steps to get started. We kept hearing over and over that the earlier therapy is started, the better. So we went through our insurance to get the ball rolling while we wait for the state early intervention program to get going. We are super blessed with a Speech Language Pathologist in Melbourne and a Physical Therapist in Orlando--both of whom have truly connected with Aerin...and us. :)

4. Started speech and physical therapy! Yay!!! Admittedly, it’s really hard to watch her have to work so much to do such basic things. I left our first PT session in tears because it brought home how many challenges Aerin faces. But our therapist, the sweetest thing on EARTH, loved me right through it.



5. Drove to Gainesville to meet Aerin’s Endocrinologist. Dr.Miller runs the largest Prader Willi Syndrome clinic in the world and has extensive working knowledge of this rare genetic disorder. Talking to her was SUCH a blessing! Everything other PWS families had said about her was true--she was full of hope for Aerin’s future, she connected with us and with Aerin immediately and she is truly an expert in her field. Under her watchful care, we are closely monitoring Aerin’s total volume to make sure she is getting enough nutrition to optimize her physical and mental growth. We will also be starting Growth Hormone Therapy under Dr. Miller within the next week or so--the most promising medical breakthrough for PWS kids in the last decade.

6. Completed Aerin’s first sleep study. I don’t think she’s ever cried as much as she did when they hooked her up to all of those sensors for the study. Poor thing! But she did great and actually PASSED! PWS kids have narrow airways and are significantly more susceptible to sleep apnea and, in some cases, sudden death--particularly as the Growth Hormone causes the tonsils and adenoids to grow large and fast. Aerin had ZERO apneic episodes during her study and the pulmonologist will continue to monitor this with regular sleep studies after starting the GH.



Whew! And those are just the BIG, MAJOR things. They don’t include all of the daily victories, like when Aerin lifts her head for the briefest moment or when she powers through 30 mls on the bottle. Like when she makes long eye contact with you and you can feel her tiny spirit burning through those big, beautiful eyes and you know that she’s inside that little, frail, limp body just waiting to burst out as soon as she’s strong enough to do so. And when a small smile flits across her face as she falls asleep and you know that you cannot possibly love anything as much as you love this sweet girl.

But there are so many hard days. Days when I feel like life is just one, big insurmountable mountain that I will never get over. And I fret and worry and grieve and despair.

And I wonder...when will my life no longer feel like this frantic roller coaster ride of super highs followed by leveling lows? When will I be able to fully surrender to His peace--the peace of truly knowing that He is sovereign over all of this and that life doesn’t have to be a roller coaster. I prefer the carousel anyhow.


Saturday, May 5, 2012

Get out the vote!


Being a rare genetic condition, Prader-Willi Syndrome struggles to get funding for research into medical breakthroughs that can significantly improve the quality of life of those with the disorder. The more people know about PWS, the more support we can give to those living with this life-threatening condition. 

And you can help!

Help the Prader-Willi Syndrome Association (PWSA) win Michelle Obama's Video Challenge and take PWS awareness to the next level! You just need an email address to sign up and you can vote once a day through the end of the competition.  



I'm STILL moving...

Imagine my surprise when I opened up my Kindle to today's entry in My Utmost for His Highest and found this:

If Jesus ever commanded us to do something that He was unable to equip us to accomplish, He would be a liar. And if we make our own inability a stumbling block or an excuse not to be obedient, it means that we are telling God that there is something which He has not yet taken into account. Every element of our own self-reliance must be put to death by the power of God. The moment we recognize our complete weakness and our dependence upon Him will be the very moment that the Spirit of God will exhibit His power. (Oswald Chambers, My Utmost for His Highest, May 5)

I was thinking more on yesterday's post and I came to the conclusion that the main work going on in my heart right now is really humility. Yes, I am experiencing complete and utter reliance on the Lord but that is only because I was brought to my knees before Him first. It is so very humbling to be brought to that place where everything I think I can DO is really meaningless. Instead it is really coming to that place where I know that everything is BEING DONE in me by the work of the Holy Spirit.

So, today I will pump (a million times) and I will change her dressing and I will calculate tube feedings and I will try to bottle feed and I will make phone calls and I will read and sing and rock and revel in the joy of living through Him instead of through myself.









Friday, May 4, 2012

I'm moving...right out of my comfort zone

Well, I thought I would have more time to write here but the days are a crazy haze of pumping, cleaning pump parts, bottle feeding, tube feeding, pumping, cleaning out the feeding bag, flushing the line, turning off the false alarm on the apnea monitor, pumping, changing diapers, pumping, doing PT exercises, changing the G-tube dressing, giving a bath to someone, pumping, singing every children's song I can remember on four hours of sleep (which, incidentally, is like three), pumping, placating playing with the two big kids, scheduling doctor and therapy appointments, pumping, throwing a load of laundry somewhere, doing a load of dishes, reading books to or with someone, helping someone use the potty, pumping, holding my sweet girl and--wait--did I mention pumping? And those are just the days we stay home all day. Most days include at least one outing to speech therapy, a doctor's appointment or church.


Whew!


So, here it is. I am living square in the middle of God's grace because He has effectively evicted me from the cozy little comfort-zone-home where I have happily resided all these years. I loathe making phone calls, but have to call everyone under the sun to get going with Early Steps, schedule private therapy, reschedule conflicting doctor appointments, and order more feeding bags. My stomach hurts--I mean clenches with mortal dread-- when I have to put a bandaid on someone, but I have to clean and tend to the hole in my daughter's stomach twice a day. I detest doing math in my head, but I work those ancient brain cells to calculate the amount and rate of each tube feed. I absolutely hate making babies cry, but I have to do tummy time with Aerin to help her neck and trunk muscles get strong (Okay, I admit I cheat on this one. I do tummy time on my chest and let dad do the rest.) And I know that this is just the tip of the iceberg. I don't think I can even fathom what is to come. This is, I suspect, just how God likes it since, otherwise, I'd be heading for the hills in retreat.


I hope that this doesn't sound as much like complaining as it probably is. To be honest, each time I take that tiny leap towards doing something that I swear I can't do, I find that I am amazed at how God gives me just what I need to get through it. It has given the verse "I can do all things through Christ who strengthens me. (Philippians 4:13)" several new layers of meaning for me.


In close, here are some pictures of my sweet thing. She just makes the best faces!










99 Balloons

A friend recently sent me an email with the subject "99 Balloons." It turns out that her niece and her niece's husband gained a powerful testimony through the birth, life and death of their little boy, Eliot. Grab a box of tissues and watch their story here:




Their story reminds me of how God is always at work in us, helping us turn our heartache into joy. In Him, death gives way to life, disability reveals ability, and pain reflects glory. I love how this couple allowed their hearts to remain fertile ground for His work and out of their son's life came 99 Balloons.


One precious part of their organization is to provide Prayer Cards--cards featuring a special needs child from another country--to those willing to pray. This is a wonderful opportunity for all of us to open our homes and hearts to those with disabilities!

Thursday, April 26, 2012

27 Milliliters

I was reading over yesterday's post and marveling at how excited we were over 27 mls. I mean, think about it. 27 milliliters. It's not even an ounce! 


And then I read this, posted by fellow PWS mom Ali, on her blog Diving Into the Waves:


Imagine the game of life - not the board game, real life - and you set your child at the starting point to go forth. To most children, you give them the directions and watch them proceed through each event in the journey. It's not a breeze, but at least they have the resources to aid them in each challenge. Then our kids with PWS, you put them at the starting point, except there are no directions. They can't eat properly, so getting nutrients for fuel is tricky. Their muscles don't work properly, so moving through the steps ahead is tricky. Their brains don't fire appropriately and so they receive inappropriate, incomplete, or misdirected messages about what to do next. Forget the challenges, even navigating the BASICS is tricky for these kids. But they have to play the same game as everyone else does. Our kids are freaking champions.


(You can read the entire post here.)


And I realized why those 27 milliliters were such a big deal. 


I know how much work it was for Aerin to drink even that much by herself. It took days of drinking five to ten measly milliliters to get her muscles strong enough to tackle the big 27 and it will take days and weeks of small victories before we celebrate one big win again.


And my heart just grows in love for her and for all kids who have such challenges set before them. We all take so much for granted. So many blessings rain down upon us from a God who loves us so richly--and many of them we completely fail to see.


I count every one of those milliliters a blessing for my little champion.


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Wednesday, April 25, 2012

His mercies are new every morning!

Yesterday we were feeling a little discouraged. Aerin was very lethargic and slept about 23 hours. We have to keep reminding ourselves that, aside from the issues surrounding her condition, she is still a newborn and will, for all intents and purposes, act like a newborn. I suppose it feels so very different because our other two NEVER slept!


Well, this morning our "sweet pickle" (as daddy calls her) woke up with the gang and was alert and active for a good 90 minutes! She did all of her exercises with daddy before he left for work, including all of the head exercises that mommy hates and always cheats on. ;) She watched big brother and sister romp on the bed before breakfast and then we packed up for our first outing--taking big brother to speech therapy. It was such a blessing to see her bright eyes wide open, just soaking up the world around her!


In addition to more awake time, she has surprised us with some good progress on her bottle feeding. Immediately following her surgery for the g-tube placement, the hospital staff stopped offering her a bottle (mostly because it took her so long to recover from the anasthesia and pain meds she was on--her slower than normal metabolism makes it harder for her to process those medications and it took her twice as long to bounce back) so when we came home, it was like having to start all over again. Since we've been home, she'd only take between 5 and 10 mls if she would wake up to take any at all. Yesterday afternoon, though, she took 27 mls! She has a really good suck/swallow, she doesn't have the muscle strength to keep up the suck/swallow sequence for very long. Well, it seems like all of her little "training sessions" finally paid off! 27 mls! We were ecstatic!

We discovered that there is an endocrinologist at the University of Florida who specializes in PWS, so we put in a call to get an appointment with her. We've heard wonderful things about her, she's written some great papers on PWS, and the pediatric endocrinology group that she is with is ranked 12th in the nation, so all in all we feel very blessed to be where we are.

Which is just where the Lord wants us to be--physically, emotionally, mentally and spiritually. 


I tell myself, “I am finished!
I can’t count on the Lord
    to do anything for me.”
Just thinking of my troublesand my lonely wandering
    makes me miserable.
That’s all I ever think about,    and I am depressed.
Then I remember something
    that fills me with hope.
The Lord’s kindness never fails. 
If he had not been merciful,
    we would have been destroyed.
The Lord can always be trusted    to show mercy each morning.
Deep in my heart I say,“The Lord is all I need;
    I can depend on him!”
The Lord is kind to everyone
who trusts and obeys him.
It is good to wait patiently
for the Lord to save us.
~ Lamentations 3:18-26