Tuesday, January 19, 2016

Another Seat At The Dinner Table

Is there ever a "good" time to add another child??? The most common answer I get from parents of small children is, "NO". I've always wanted a big family. Four children was my minimum and I really thought I could go for six... or more. At least this is what I wanted when I thought that God understood my plan for my life and I would be getting married in my early twenties and procreating soon after. Well that wasn't exactly how my life played out and I hopped on the motherhood train almost a decade later than I had anticipated. While pregnant with Lydia I was already thinking about how quickly we needed to have another child if I was going to pop out one more kid before having the title "advanced maternal age" unceremoniously slapped on my forehead.

Then came Lydia... this feisty, strong-willed, joyful, ever-energetic little being that makes me so so happy to be a mom - and yet makes me question my ability to be a decent one several times a day. Add to that all her medical issues that require constant vigilance. How could I plan a good time to have another child and make sure I wasn't going to have an infant at the same time Lydia was requiring surgery or some other more acute care. The truth is - I couldn't.  I started to wonder if we'd ever be able to add a second child - forget number three and four. And yet... I couldn't stop thinking about what our family would look like down the road and I just didn't think we were complete.

This summer, due to the wonders of Facebook, I saw that a family friend from California was in town for a few days for her daughter's basketball tournament. By some miracle we worked out a time to meet for a quick lunch. Somehow amidst my precious angel whipping a pizza off the table and getting cheese all over my skirt and then entertaining the other diners on the patio by crawling onto the only empty table and doing a victory dance, I managed to actually hear and remember something this dear woman said to me. She told me how she had her second child while her first child was undergoing treatment for a brain tumor. "We just had him on faith." she said. I pondered that line on the way home. I said it to myself over and over.

Another woman dear to my heart had once told me that when it comes to kids, you don't make decisions based on what your life looks like now (when your kids are little). Instead think about what you want your dinner table to look like down the road and then make your decision. I knew I didn't want just one kid sitting at the table with Joel and me. I wasn't exactly sure what to pray for or what kind of an answer I wanted. I just couldn't figure out a "good" time to have another child and at times I thought I was crazy to add one at all... But I stepped out in faith and somewhere deep in my heart I let God know that I wasn't sure when was a good time or how this would all work out - but I didn't want Lydia to be an only child.

And God answered...

Our son will be joining us some time in May. We are grateful and relieved to report that his little spine is intact and right where it should be. The doctors say everything is looking great so far. We would love it if you would add this little guy to your prayer list just the same. Prayers for his continued health and development and an uneventful delivery would be great! The fact that Lydia requires special care daily makes it really difficult to plan for our boy's arrival - and is causing me no shortage of anxiety. BUT I know that this little guy is God's answer to my heart's cry. He will be faithful to help us work out the details whenever our son makes his appearance. I just wish God would let me in on what that plan is... :)

Friday, January 1, 2016

New Year 2016!

Happy New Year!


This was us on new year's day two years ago. I was finally getting to hold my baby for the first time. It was AMAZING - and terrifying all at the same time.There was so much uncertainty about the days ahead. The more I tried to read to educate myself, the more the unsettling questions bouncing around my mind increased. Would she be able to... how would we handle...  I felt completely unprepared for all that this precious bundle was bringing my way...


NOW we have a beautiful, crazy, funny, inquisitive, sweet, and very strong-willed two year old. We are so so grateful for how far we have come in our journey these past two years. We haven't always liked the answers to the questions we asked two years ago. But God gives us grace for every step forward - even if we don't see it right away. 


Lydia experiences a full range of emotions every day - and causes her mama to do the same. One minute she is showering me with hugs and kisses because she gets to have raspberries for breakfast, and the next minute she is face down on the floor wailing because I put them on the plate wrong. There is NEVER a dull moment when Lydia is in the room. She makes us laugh a lot - and she seems quite proud of herself for doing so. We are currently working very had on learning to obey. There is a little song we have been working on about obedience that starts out, "O-B-E-Y, obey your mom and dad." Last week she climbed on top of a speaker next to the TV ( a definite no-no) and proceeded to shake her booty while loudly singing, "O-B-E-Y, mom and dad!" What's a mom to do? It was hard work to hold in my laughter while I put her on time out! She can run quite fast and climb onto just about anything. So basically nothing in the house is safe unless it's locked or on top of the fridge. I have to remind myself almost daily, as I am chasing her around and cleaning up messes, just how incredibly thankful I am that her little legs work! Her strong will and sass is beautifully balanced with a sweet side. Lately she has been rubbing my back and telling me, "good girl, mommy." She is quick to say thank you for just about everything. My greatest joy these past two weeks has been watching her enthusiasm for praying. She even lined up her toys and prayed with them! She really is a lot of fun. We love her so so much and can't wait to see what the coming year brings in her little life!

P.S. For those who are inclined to pray for Lydia... She has another UTI. We've had 3 blissful months of being infection free, so it's frustrating to have this creep up again. We spent the first part of her birthday taking her to a clinic to get tested and a good part of this morning trying to get an antibiotic prescription filled. Lydia hasn't been feeling great and having lots of trouble sleeping. Hopefully things will start to turn around now that she is on meds. We are so thankful to live in a place where we have access to the care our girl needs!

Monday, September 14, 2015

Dark Skies and Rainbows

     We have the incredible blessing of using a friend's cabin from time to time. A few weeks ago I was itching to get away and decided to venture off to said cabin with Lydia in tow for a four day mother-daughter adventure before Joel would join us for a few more days. I could not wait to get to the water's edge and just relax. Apparently, I forgot that I was bringing Lydia on this mother-daughter adventure. "Lydia" and "relax" have never been found in the same sentence to date. For starters she is a delightfully, strong-willed child. I say "delightfully" because I truly am delighted when I think of what a fantastic adult she'll make. Someday. If I survive raising her to be one. :) Lydia is also incredibly social and loves to have pretty much constant interaction. Playing by herself is something she only feels the need to do about twice a week for no more than 10 minutes. All my hopes of her entertaining herself at the water's edge while I sat next to her and read a book were pretty much trashed within a few minutes of our arrival. We did have a great time splashing, throwing rocks off the dock, touching every tree on the property, and dutifully clearing the deck of each and every spider web we encountered. I din't know she had such a severe dislike of spider webs until she grabbed my hand and pulled me over to the deck railing as she pointed and said, "Uh oh" repeatedly. I asked if she would like me to get rid of the web. Her eyes lit up, she clasped her hands, and excitedly replied, "Ohhhh. OK!"And so played out the next 30 minutes of the day. And I thoroughly enjoyed every minute of it! She really is so so fun to play with.

     Lurking behind all our fun and "relaxation" was that ever present spina bifida. We just can't seem to catch a break from it this summer! Within 24 hours of getting to the cabin I thought she had a UTI and debated about finding an urgent care or driving home. Then the pooping started. I'm not exaggerating when I say that for 2 days my poor baby barely had 60 seconds at a time with no poop in her diaper. I would change her, walk to the door of the bedroom and there would be a significant amount in there again. Lydia was less than thrilled with all the diaper changes. She conveyed her feelings to me with lots of kicks to my face during diaper changes and cath sessions and then added in some hair pulling for good measure. She was frustrated. I was frustrated. She cried. I cried. It was exhausting. Then Joel showed up and life got better as it usually does when he is around! After some lovely days together, we were happily packing up to go home when Lydia started having wet diapers. In Lydia's world, wet diapers=UTI. I drove home thinking about who to call first in the morning and which clinic to drop her urine sample off at this time. Sigh.

     Thanks to my amazing husband I was driving home in a kid free car. It was almost weird to be able to have a complete thought. Weird and wonderful that is. I threw in one of my old mix CDs from the one and only Sara. Belted out "Defying Gravity" from Wicked - a few times. And then, after singing a few more songs I might not admit too, I finally gave in to what I knew I really needed to do with my time - I started to pray. I had been reading in the book of Psalms the day before and had read a verse about "pouring your heart out to God". I knew I needed to do just that. It's hard to start when so much of what will come pouring out is so ugly and so painful. I often feel like people don't know what to do with the heartache I let spill out at times. So I become ashamed of it and try to hide it. But nothing is hidden from God so you might as well spill. I cried out about a dear friend with cancer, a sweet friend whose marriage is ending, and about relationships in my life that are painful and broken and confusing to me. I cried about how much I miss my sister and need her by my side to raise my special child (twice a year visits aren't cutting it). I cried about how lost we feel in Lydia's health issues; there seems to be no solid plan for her in sight. I cried because seeing my baby in pain several times this summer hurt in places I didn't know existed. I cried because my never ending exhaustion seems to keep me from being the person I want to be and keeps me from loving all the broken and hurting people around me like I should. The sky was getting darker and darker as I approached the cities. The almost black hue surrounding me seemed to fit my state of mind perfectly at the moment. And then IT happened... The vibrant colors of a rainbow stretched across the blackness in front of me. I could see almost the entire arch and the beauty of it made my heart soar. I'm sure lots of people enjoyed the rainbow that night, but I swear God put it there just for me. He sent me all those beautiful colors as a reminder that He sees every tear that falls and that I'm not alone in this fight. The darker the skies we face, the more beautiful the rainbows we get to see. God is so good.

     I wish I could say that all has gone well since that drive home. But that just isn't real life is it? Our life seems to be ruled by poop. There has not been a day this summer that Lydia pooping or not pooping has not stressed us out. We started summer with a severe bout of constipation that made her poor stomach so distended all the veins were fully visible and she began puking every time she tried to eat. Broke. My. Heart. Well we learned that severe constipation causes Lydia to get a UTI. When we finally reversed the problem and dealt with a non-stop flow for a day or two - she also got a UTI. Her primary MD, whom we love, exclaimed "Oh my gosh! We just can't win!!!" And that is how we feel when it comes to keeping this girl healthy - we just can't win. As I'm writing this we have yet another culture pending in the lab, that I know will show a UTI. I have lost count of how many times we've been at the doctor's office this summer. The amount of time I've spent on the phone with different clinics this past month qualifies as a part time job. Everyone's consensus is that if we could fix her poop problem, the UTIs would probably go away. Yet, we can't find a consistently effective way to clean her out without extremely undesirable side effects.The last two stimulants we've tried have made her lie on the floor and moan and rub her blanket on her face. I just can't do that to her daily. I read a facebook page almost daily where other SB moms, whose lives are ruled by poop, talk about what works for them. There is a surgery they can do at age 5 to promote social continence that we feel very hopeful about. But we are a long way from 5, and days of 14 diapers before midnight are going to make life difficult for her long before then. Our current GI doctor doesn't seem to keen on some of the things I've read about doing until then. Our primary MD disagrees and suggested taking her to a specialized SB clinic. She sent a referral to one, but they don't have any openings until mid January AND they don't have a GI doctor. Sooo... we just don't know what to do at the moment and we would love your prayers for wisdom. In May, we got nothing but good news from her bladder test and spine MRI. The doctors said we wouldn't need to do them for another year. Now, because of Lydia's continued health problems they want to redo both tests this month. Please be praying for her bladder test on September 15th (tomorrow) and her spine MRI on September 30th. We would love some answers and for some light to be shed on a better plan for Lydia.

All the confusion about what to do have made the skies really dark these last few weeks. But the rainbows have been there too. On a day when I was really discouraged and felt like I was failing my daughter a sweet friend sent me the most encouraging text full of words my heart needed to hear. There are the precious friends who tell me not to worry about bringing anything to our lunch play date when they know we are coming straight from a MD appointment. Joel and I aren't very flexible with our times for date nights since we have to plan around Lydia's cath times. But yet another sweet friend took a late shift at the Korkki Casa and let us go to late night happy hour (where we had a very detailed discussion about Lydia's pooping status. I was desperately hoping that the cute couple next to us, obviously on a first date, couldn't hear us.) And then there is the person who has loved our child and us in ways we can never repay. There are many more I could list - this is just in the last month! If we didn't go through dark times, we would never be able to experience the rainbows found in the depths of God's grace and love played out by people around us. Thank you to all who have painted those rainbows around us. 

Tuesday, December 9, 2014

Swim meets, Mary, and Me

When it comes to endurance... um well... sprints are really more my thing. In high school I was MVP of my JV swim team because of my 50 yd freestyle sprint. I loved that sprint. I loved standing on the starting block, every hair on end, waiting for the start signal. It was all out - no time to take more than one breath. I was pretty decent at the 100 yd free too. The 500 - not so much. I teared up the first time my coach said I had to do it at a meet. I liked winning and I was not going to win that race unless every other swimmer in the race developed debilitating leg cramps. I couldn't figure out how to pace myself and not go all out at the beginning. That race did not showcase my strength.  
That's similar to how these last 6 months have felt. I thought I had moved through the stages of grief (denial, anger, bargaining, depression, acceptance) rather nicely. I sprinted to the "acceptance" box and had no intentions of moving. Then came the visit to the urologist, the start of our new cath routine, starting on medication. The dominoes began to fall - there were the urinary tract infections, more doctors and more meds. I began to have to live a little more day to day. I started to fully grasp that the cathing, the meds, the multiple doctor appointments - were not things I could just sprint through in the short term. THIS IS OUR LIFE WITH LYDIA! There is no foreseeable end to all this - until Lydia can manage her own care. (and PS - I don't think that Lydia taking over will really relieve this mama's heart too much). This realization sent me on a trip to the weird Bermuda triangle of anger, bargaining, and depression. Seriously. I feel like I've disappeared into this triangle. Round and round I go. Sometimes I visit all three spots in a day. I'm not happy about being here. I'm surprised at being here after I thought I was doing so well. I'm not proud to tell the world I'm still hanging out in this triangle. And yet here I am and it's wearing on me.

In one of my "bargaining" moments I told God something like this, "Couldn't you have given me something else to deal with? The long term stuff is not something I excel at! I would rather have had Lydia be born with something else - where we had to stay in the NICU longer and didn't know what her outcome would be. But we would pray really hard and talk about our faith in You. Lydia would be healed completely and we'd give You all the glory." Translation - I get what I want (Lydia is healed from all physical disabilities) and I cease to have something in my life that continually reminds me of my need for God. I could be self-sufficient and to the world it could look like I had won. 
Then there is the loneliness. I think that being a stay at home mom can be lonely at times. I think having a child with special needs that you are still trying to figure out how to deal with - both practically and emotionally is even more lonely. I don't know how much to share or not share about what is going on. I don't want to be too needy, too emotional, or too anything. It's hard to share what is causing me anxiety when I don't want to seem ungrateful for all that is going so well. It's not easy to confess that when people are talking about potty training, kids going off to school, or summer camp, I immediately start beating back the "how is that going to look for Lydia" thoughts. I don't want to complain about how inconvenient it is to plan life in 4 hour increments (due to the cathing schedule) since of course I would do anything for my child. For the last six months I feel like I've only been half present at anything. Half of me is always trying to get my feelings about Lydia's sweet life in line. It's exhausting! I know it is my own fault for not engaging those around me more fully, but quite frankly I often don't have the emotional energy for it. And knowing it is your own fault doesn't make the loneliness any less palpable. 

As I've been reflecting on the Christmas story of the birth of Jesus, I've been thinking a lot about Mary. I am in NO WAY comparing my situation to hers. For starters, I can assure you Lydia was not the result of a virgin birth. :) But I do wonder if Mary didn't have some similar feelings to me. It says in Luke 1:38 that after Mary heard about God's plan for her to become pregnant though a virgin, and bring the Savior into the world, he response was, " I am the Lord's servant. May everything you have said about me come true." Wow! If you understand the gravity of the situation she was about to find herself in, due to the culture and belief system of that time, then you know that her response is astounding. That is a response I would love to have. But after some hard days, I wonder if Mary ever wished this was not her path. I wonder if she ever felt like telling God she could have done much better in a different situation. Were there any other parts of His plan available? Maybe she could be considered for something else? I wonder if she felt lonely. I'm sure as she stood waiting for her turn to draw water from the well it didn't matter that she was surrounded by women. There probably weren't many women in her village she felt she could discuss her special pregnancy with. There wasn't any other woman who had been in Mary's position and could empathize or understand all that was going on in her heart. Mary didn't know exactly what her child's future would look like, but I think she knew there were parts that were going to be painful for her. She probably also had to learn to live in the moment with her child lest any anxiety about the future steal the joy of the present.  
And what about Lydia??? She continues to be a bright and happy little girl. To look at her you would never know anything is wrong. Several people have commented that it is almost as if she didn't have spina bifida. Well I can tell you I'm reminded that she does indeed have spina bifida several times a day. We had a brief window where cathing was going really well. And then Lydia decided she doesn't have much patience for the whole routine. Since she is not at an age where she can be reasoned with or told to hold still, it makes for some interesting situations. A tiny tube that is supposed to make its way into a tiny hole on a very wiggly baby trying to roll over and crawl away from me - oh and you are supposed to keep that tube sterile. I'll let you imagine how that is going. I have definitely been doused with pee on more than one occasion. The good news is that we ended the summer free of urinary tract infections and she hasn't had one since. In January we will have a test done to evaluate her bladder pressure and have another ultrasound of her kidneys. 

In addition to her bladder issues we now have poop issues. The last part of her GI tract does not have great - or any - muscle tone. This means that unless her stool is very soft her body can't get it to the exit point.  When Lydia can't poop for several days her poor little tummy looks very distended. We are doing things to combat this. The problem is that all of a sudden her system cleans out and we are changing her diaper 4 times in a hour - or worse she is standing in the tub with watery poop running out of her. Not fun for any involved. We are seeing a gastrointestinal MD and praying we can find a way to get Lydia to a happy medium between these two scenarios. 

There is one other thing we found out this fall that is a prayer point as well. Lydia had a MRI of her brain and spine done in October. The fabulous news is that brain looks normal. The not so fabulous news is that there is a sac of fluid at the base of her spinal cord. The doctor thinks it is slow growing, but it will have to be taken care of at some point. The doctor is hoping to wait until Lydia is older so he can take care of the fluid sac at the same time he takes care of her tethered spinal cord. We will do another MRI in April to see if this sac is growing. Please pray that this fluid sac does not grow. 
Despite all that is hard - Lydia is an absolute JOY. We thank God every day that we get to have this little wonder in our lives. I wish I could bring her around to each and every one your houses to hang out for a while because I think she's kind of a big deal! I mean look at her!

Monday, May 12, 2014


Hello friends!  I know it's been a while since there's been an update.  Mostly it's because we've been doing well... and playing!  In the last 2 months we've been fortunate to spend some time with my family in California and visit some dear friends in Florida.  Both coasts before 4 months old - not bad for a future world traveler.  She must have some of her grandpa's travel genes because she's already an expert. There were very few tears over the hours and hours of travel - much to the relief of all those seated in our vicinity. After all the unknowns surrounding her birth, surgery, and managing multiple MD appointments for the first 2 months of her life we have just really enjoyed the last 2 months. We haven't had to worry about anything and its felt like we have a "normal" baby.  Miss Lydia started sleeping through the night, started smiling at people - especially if they tell her she's pretty, and she'll talk to anyone she thinks is listening - usually the baby in the mirror. There is no shortage of compliments for this beautiful girl when we are out and about! Life just started to feel carefree again and I almost forgot about spina bifida...

Well our vacation from reality ended last week.  We went to the urologist last week and they did a test to measure the pressure in Lydia's bladder. Unfortunately her bladder pressure is high and her bladder is almost never relaxed as it should be. This makes the kidneys unable to drain into the bladder properly and if left untreated can cause kidney damage.  Her bladder also holds very high volumes which may cause urine to back flow into the kidneys and cause damage. On top of this, her bladder doesn't empty completely making her prone to infections from urinary retention. Not good!  Since the test results were not favorable the urologist wanted to go over our treatment options right away which meant she ended up squeezing us in between surgical procedures. She proceeded to give me the bad news and then rattle off our treatment options in less than 2 minutes and then wanted to know if I felt strongly for or against any of those options. Hmm.  What do I feel strongly about???  I'm against having to do anything to my baby that is going to make her uncomfortable. I'm against my child having irreversible kidney damage before she's a year old - or ever. I'm for telling you to go jump in a lake for seeming so nonchalant about me having to pick one of these options. Since I couldn't say any of that without sounding like a crazy person I was standing there trying to process all that she told me while bouncing my fussy baby, keeping her pacifier in, and praying I make the right decision for my child. I'm so thankful I have the medical knowledge that I do from being a RN, but it still isn't easy - especially when it's taking all your resolve not to end up in a puddle on the floor. For now we are going to treat Lydia with oxybutin - a medicine that will help relax her bladder. While this medicine is doing its job of relaxing her bladder to protect her kidneys it may relax her bladder so much that she never urinates without using a catheter to drain her bladder. So we also started her on a cathing routine. I did not leave that appointment in the highest of spirits. I know that life always looks brighter when you are thankful, so on our drive home I told Lydia all the things I was thankful for; from the sun shining to the fact that we have medicine to give her.

As we started our new routine in that week before Mother's Day, I embarked on a roller coaster of emotions familiar to most moms. Guilt, worry, fear, anger, frustration - all enveloped in one big heartbroken mess. It was all I could do not to bawl as Joel held her legs and I cathed her for the first time.  She did great and I'm thankful I know how to do this. That doesn't make it any easier to accept the fact that this isn't just something we have to do for a week or a month.  This is her life now... for years to come. Its hard not to let your mind run ahead and worry about how all this could affect in her future. Then to make matters worse, Lydia got a urinary tract infection. Talk about a tidal wave of guilt. I was absolutely miserable over being responsible for adding to my sweet baby's discomfort. This then led to an extremely frustrating day of trying to obtain antibiotics for her from very unhelpful people. It seriously took a full 12 hours from the time I started making phone calls until I had antibiotics in my hand. Suffice it to say none of us were having a great week. Then add in the side effects from her new medication: urinary retention, constipation, overheating, and severe dry mouth. All of these have me wondering if we are doing the right treatment for her, but I'm afraid of what will happen to her kidneys if we don't use this medication. My heartache over my beautiful baby made my chest physically hurt.

By the time dawn was breaking on my first Mother's day I was a mess! I was up with Lydia at 3:30 am as she was distressed over her dry mouth. She loves to suck her thumb, but that doesn't work so well with a dry mouth. Watching her frantically going back and forth between her two thumbs and howling when she couldn't soothe herself just made me so sad. After 3 hours of continually wetting her mouth with a syringe and trying to get her to suck on a wet wash cloth she finally fell asleep on my chest. Then in the midst of my sadness I was just really angry. Angry that Lydia had to deal with this. Angry that I had to cath her in an hour. Angry that she had this blasted spina bifida. I felt like my soul was limping along as we walked into church a few hours later. I also felt like I was a pressure cooker of emotions and could explode at any moment.  Soooo I snapped at my husband. Then as I tried to get out the words to say I was mad at him for this and that I fought back all the hot tears threatening to pour out. I knew that I wasn't really mad at him. I was mad at spina bifida for the way it was affecting all of our lives... and mad at myself for not handling it better.  It became apparent that I was not going to make it into the service. I asked Joel for the keys but he held onto my hand and suggested we go on a walk together. He must have read my mind - which at that moment was making plans to get in the car and drive somewhere where all this did not exist. Joel was a wise man and held onto me! And now we are "Those Parents"... The ones who left our child in the nursery while we went for a walk and then sneaked back in before the end of the service. Sorry Pastor Kerry, it was a "desperate times" kind of moment.

As I have been climbing out of the pit that has been this last week, there are two thoughts that have been comforting.  First of all my daily devotional (Jesus Calling by Sarah Young - it's a good one people) was derived from John 16:33, which states, "I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world." God wants me to remember that He has the final chapter written. This world and whatever hardships we experience in it won't last forever. That is so good to know! Secondly, there is a Chris Tomlin song with the chorus, "I know who goes before me, I know who stands behind. The God of angel armies is always by my side."  Now how can I possibly walk in despair with that nugget of truth to rest upon? The God of the universe - who has every angel at His command - still takes the time to surround me, Joel, and our Lydia - and walk with us through whatever the day holds.

Thursday, February 6, 2014

Urologist Appointment

I can tell that people were praying for our appointment with the urologist yesterday. Lydia has had a cold and was fussy all day. Yet she was PERFECT for the whole appointment- happy and charming the nurses and techs. Lydia had another ultrasound of her bladder and kidneys. Her first scan when we were still in the hospital showed that her kidneys were small and her bladder was very large. Her ultrasound yesterday showed that her kidneys have caught up and are now an appropriate size. We are thrilled with this news. Thank you for praying. God is at work and He is good!  

We still don't know what type of issues she'll have with her bladder yet. The urologist is having us wait until May to do a test that will measure the pressure in her bladder. Too much pressure in her bladder would cause urine to back up into her kidneys. However if her bladder can't handle too much pressure then she would be leaking urine.  I don't really want her to deal with either issue! But I can't worry about things we don't know yet. So for now I will be happy with our good news, enjoy my precious daughter, and refuse to worry about the future.  God will help us be ready for whatever we have to deal with when the time comes.  Now is not that time!

Bath Time!

Monday, February 3, 2014

Lydia's Progress

My mom is telling me that I need to write something because lots of people are asking about Lydia!  I never cease to be amazed, and incredibly humbled, at how many people care about out sweet girl. Lydia LOVES to be held, so finding time to write is tricky.  Also, I seem to be having trouble putting coherent thoughts together so don't expect too much from this update! No deep thoughts today!

Last week we went to see the neurosurgeon to have a head ultrasound. The neurosurgeon showed me all three of the head ultrasounds that Lydia has had.  The ventricles in her brain (where they are watching for extra fluid to accumulate) have increased in size a little bit. However the MD feels that it's only a slight increase and probably just her body trying to adjust to a new way of dealing with her cerebral spinal fluid or CSF. Due to her spinal defect her body leaked spinal fluid out the hole in her back prior to surgery.  Surgery, although necessary, disrupted her body's way of dealing with the CSF which is why they are concerned her head may swell. The neurosurgeon was happy enough with how things were looking that we don't have to have another head ultrasound until the end of March. He was also very impressed with Lydia's movement in her extremities and her response to sensation in her feet. We were freed from our 60 minute time limit in the car seat and she doesn't have to sit on the foam donut anymore.  The MD said her surgical scar is looking great and we are no longer doing dressings which is a huge relief.  God is so good and we are so thankful for a good report.

Now we see the urologist this Wednesday and Lydia has to have scans of her kidneys and bladder again. This is the area where I am seeing some problems with little Lydia.  If you could please be praying for a good report on Wednesday, that I would be able to ask the right questions, and that we would have a clearer picture of how to help Lydia.

Thank you again for your care, concern, prayers, and notes of encouragement.  We are so grateful for every one of you!

What are you looking at?