We're done!

 Happy 6 month birthday Harper!

Dr. Jimenez and Harper on her post-op check up. Mark was telling Dr. Jimenez how much we appreciated him; "My pleasure" he answered. You can truly tell that it is a pleasure for him to do this procedure for the babies.

Well, this part of our journey is coming to an end. We will travel back to San Antonio for new helmets as she grows every so often.
Since her surgery, I have looked up a little more information on Metopic synostosis. I am convinced that we wouldn't have been able to find Dr. Jimenez with out having first heard about him through Carmen Golden Keith. I told about this briefly in the very first blog. God's kindness to us is so humbling. His timing was perfect. Many babies have had the traditional surgery, but there is no comparison in how much better this one is. Thank you once again for all the prayers (they held us together) and gifts that made this trip possible.

Psalm 33:2-3 Praise the Lord with the harp; make melody to Him with an instrument of ten strings. Sing to Him a new song; play skillfully with a shout of joy.
I have always thought of this as Harper's verse. Her name means: Harper - one who plays the harp. Ellis- my God is Jehovah. She will be a sweet song of praise for Jehovah.
Psalm 30:5 Weeping may endure for a night, but joy comes in the morning

Helmet day

 Darren looking over the fit of Harper's helmet. He would put it on her, mark where he needed to make adjustments, and go to another room to trim the edges.

 Waiting on Darren to come back in the room. You can still see her swelling, but it is going down.

 All done. She is tolerating it very well so far. Babies that have had the metopic suture corrected have these points on their helmets. Bone was removed from her soft spot to the base of her nose. This point is to make contact down to the base of her nose to prevent this area from growing out any further. There is a lot of space to the sides of her forehead so that her head will grow in that direction.

 Riding back to the motel with the sun in her eyes.

Mark laid her on the bed when we got back, and she immediately rolled over on her belly. Maybe it won't slow her down very much.

We haven't done much today except to pick up her helmet. She will go through a few days of adjustment time that it doesn't have to be worn 23 hours a day. She wore it for a couple of hours before we took it off. I fed her and she went to sleep. I laid her on my chest while she slept for over an hour, all while she wore it. I hope she continues to do this well adjusting to wearing her orthosis. Time to get out the glue gun so we can start putting velcroe on her bows.
This has been a day of much needed rest. One more appointment and then we start back home!

Much love, Brook

Mark said I should put a scripture about the helmet of salvation for today. He thinks he's so funny!

The Lord your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing.  Zephaniah 3:17
I am so glad I serve such a loving and gracious God, who has been with us every step of the way.

 Darren, "the helmet guy", manually measuring Harper's head. He put a stocking cap on her head to better see its shape.

 This is Harper in the laser scanner. It literally scans her head in a couple of seconds, and then sends the info to a computer. We can see the outline of the shape of her head on the screen as soon as its done. I don't know if you can see it, but at the top of the screen is a little blue toy that has a tiny spinning light in it. Darren held it in front of her and turned it on to get Harper's attention and keep her still while the machine scanned her head. Dr. Jimenez used one almost identical to it while taking photos of Harper. Bro. Kelley sells these exact same toys in the camp store. I bet no one knew the camp store carried neurosurgeon's toys!

 Darren and Harper. She wouldn't take her eyes off of him. You can just see the corner of the STAR scanner behind them. It looks like a magician's box.

 Harper and Barney at the mall in San Marcos.

Harper has learned to roll while we have been gone. We lay her on the quilt and away she goes. Mark had to get her out from under the bed this evening. I don't know if you can tell, but this is her jungle gym of toys that she had gotten against and somehow straddled. She worked and worked until she got loose and could keep rolling.


All of these pictures were taken today, Monday, Feb. 20, The date is messed up on the camera.

We went to STAR Cranial center to have Harper measured for her orthosis (helmet) this morning. They did this at the hospital Wednesday before her surgery, and today we went for the post-op measuring. These measurements will be sent to Florida (Orlando, I think). Harper's helmet will be custom made there and next day aired back to San Antonio. We will go pick it up tomorrow at 1:00 PM, and Darren will custom fit it to her head. One of the adjustments we will have to make is that she will get hot wearing the helmet. He said after a couple of weeks her body would acclimate itself to wearing it. She would begin sweating in other places, instead of losing so much heat out of the top of her head. She won't need anymore onesie undershirts, I guess.

Harper's forehead is still very swollen right where the bone was removed. Darren said it was OK, though. I think you can see a little bit of the swelling in the pictures.

After our appointment this morning we rode up to San Marcos to the outlet mall. This is the biggest outlet mall I have ever seen! It was hard seeing so many stores that I didn't have time to go into. You could spend 3 days there and not get into all the stores. Bath and Body had a 90% off shelf, what luck!

We have been on such an emotional roller coaster ever since Harper was born. She is such a little trooper, though. She will sometimes grab my face and kiss my tears. Blessings come in unexpected packages, I guess. We so appreciate your continual prayers.

Much love, Brook

Lamentations 3:22, 23   Because of the Lord's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness.

Harper went from eyes swelled shut this morning to laughing and rolling across the floor tonight. What a difference a day makes.  The trip to the mall was fun but this big city traffic ain't for me.  I'd take race street on Friday night any ole day.  Chandler and Kara will be going home in the morning and we will miss them.  I am so proud of them and the way they have handled themselves the last few months.  It has been difficult for them and   sometimes I think I forget about that.  I love my kids and I want them to know that I am truly blessed to be able to call them mine.               Mark

Off To The Mall

Harper woke up this morning with her eyes swelled shut but as you can see they have opened up.  Her little face is still really swollen but she is in a good mood.  Dr. Jimenez told us to get her out today and do something fun, the activity would help the swelling.  Big sisters idea of fun is called shopping so its off to the mall we go.  We will try to post more later.   Mark

This picture was taken very shortly after surgery. This is how she looked when we first saw her after surgery. She was very pale, but looked normal. She began swelling later. The swelling is normal and mostly caused from medicine they give her during surgery to prevent bleeding.


I didn't intend to post this many times today, but I'm very slow. I've had to do this in stages. I wanted to get the pictures on here. (I needed aunt Deda here to be the photographer.)

It seems as if everyone at the hospital knows who Dr. Jimenez is. The worker who checked us in yesterday morning was going over our information and commented that we were here to see their "miracle worker". Other doctors and nurses commented on him being amazing. It sure did feel good to hear so many good reports from people all over the hospital, who didn't have to say anything.
Dr. Jimenez was standing by Harper's bed when I walked back into her PICU room grinning yesterday evening. "What do you think about that big scar?" (It appears to be less than an inch compared to the traditional approach which would have been from ear to ear across the top of her head)  It was neat to see how much pleasure him and his wife (she is the plastic surgeon who also helps perform the surgery) seem to get from doing this. They have developed this and are so proud of it, I think. Rightly so. What a difference it has made in our lives and hundreds of others--so far. Countless others in the future. Mark asked Dr. Jimenez if he received a lot of criticism when he began doing this procedure. "Oh, yes" he said. Mark asked "what about now?" "No," he answered, "They can't argue with the results."  Nicely said.

The surgery took longer than we were told it would. It turned out to be because they were filming for teaching purposes. Getting the right angles for the cameras and going slow explaining everything made it take about 30 minutes longer than we thought. When the first hour had passed those last 30 minutes were excruciating. Thirty minutes became a very long time when I thought something might have went wrong. Wai was very appologetic for not telling us before the surgery was over. "Oh no," she said, "we would have called you if anything had went wrong." (They could have had to open her all the way up if she had started bleeding.)
The only comic relief of the morning was my dad commenting on the people in the waiting room. The world doesn't live up to his standards always, and he doesn't mind expressing that to us. A little too loudly. Our comic relief quickly became a prayer, "Lord, please let these people be deaf so we won't be killed"

So far her recovery has been exactly what they expected. She would wake up in pain, receive morphine, and sleep some more for around 8 hours yesterday. During the night she began eating better and beginning to return to herself. She smiled a few times today, and gave monkey and Kara just a little bit of sugar. The swelling should be gone by Monday when they measure her for the helmet.

I know all of the pictures and posts are a jumbled mess today. I hope you can make sense of it all. I'll try to do better next time.

I am still in wonder that God has been kind enough to allow us to find out about Dr. Jimenez and this procedure and provide a way for us to come. Life has a way of knocking you around sometimes. I have felt battered and bruised and overwhelmed and "How much more can we take, Lord?" He has his ways to remind us he cares. He sees even the sparrow fall. He sees me, and my little sparrow named, Harper.

Much love, Brook

Job 5:9 He performs wonders that cannot be fathomed, miracles that cannot be counted.

This was a few hours after surgery. They got her out of bed and gave her to me to hold. I wouldn't pick her up before they gave her to me; I was afraid to touch her.


This has been a long ordeal. I'm glad the worst is over. We appreciate all the prayers so much. I have thought about Isaiah 41:10 & 13 a lot. The Lord takes hold of our right hand and tells us not to be afraid. I have baby sat many kids in my adult life (including my own). I've taken some by the hand and had them plant their heals and quit walking. I've also had them go limp and had to pick them up and carry them. I know He has been holding my hand, but it still hasn't been a pleasant experience. I'm glad He didn't let go or leave us alone though. He is faithful; He has seen us through.
Will write more a little later. Papaw Jr. is wanting to know where a mall is to take Chandler and Kara tonight. He is getting stir crazy. It won't be pleasant for anyone until he gets settled. Ha! If pappy ain't happy, ain't nobody happy!

 These are pictures on the wall in the specialty clinic in the pediatric hall of the hospital. These are pictures and thank you notes that parents have sent in to Dr. Jimenez after he performed their child's surgery.

This is right beside the pictures in this hall way. The red dots show where the babies are from that Dr. Jimenez has operated on for craniosynostosis. There is also a list of countries that babies have come from posted underneath this map. Nurses and staff at the hospital also told us different places babies have come from to have Dr. Jimenez do their baby's surgery. Chili, Mongolia, Saudi Arabia, Pakistan, Spain, Mexico. This week someone from England contacted him.

 Kara and Harper right before surgery.

Mark got back this morning to see her. Harper's eyes are swollen not just half closed. It's hard to tell in the pictures.

Chandler and Harper

 Big brother admiring her swelling. The morning after surgery.

Chandler loving her right before surgery yesterday.

more pictures

 Ah ha! I'm learning how to add captions!
This was a good hamburger joint we ate at. We don't recommend going after dark. This is a picture of Kara and the security guard. We are almost positive he was wearing a bullet proof vest. (no kidding) This big fella made us feel safe.

 This isn't the clearest picture but you can see her swelling some. This was this morning before we came home.

This is for Aunt D. Monkey made it to the hospital. She also got sugar from Harper this morning.

pictures of surgery day

Harper in her hospital gown right before surgery. This was a little bit of a bad hair day. Oh, well.

Papaw and  Mamaw came in to say their last good byes before surgery.

I am so blessed

Well we are back at the motel with our angel.  Chandler can't  take seeing her eyes swelled almost shut.  None of us like it, but the swelling will start to subside soon. She is resting on big sister's shoulder with big brother right beside her.  My 3 angels all together, I'm so blessed.  Brook is so exhausted and glad to be back at the motel.  She is a rock.  I will say it again, I'm so blessed.  I just read Kara's post which brought the tears. Last night as we thanked Dr. Jimenez I called him a miracle worker. He said no, I'm just His hands.  WOW!  We will stay in and rest now, and the appointments will start again 8:00 A.M. Monday. Hopefully we will be home next Friday night.  Thanks for all the prayers.   Mark

From Big Sister

            Well, my Dad told me he wanted me to put a post on the blog about how I have felt through this whole situation with Harper.  So I guess I'll just start at the beginning.  I was so excited when I found out my mom was pregnant!  The first thing that came to my mind was, "I'm going to have a little sister!"  Of course not even thinking it might be a boy.  Before we found out what we were having I wanted to buy all of the clothes, big bows, and anything that was for a little girl.  As soon as we knew she was a girl, that just made me want to do that all the more.  I got to be in the room when my mom had Harper.  That was one of the neatest experiences ever, because that was MY little sister.  That day when the pediatrician came in to do the checkup he said that she showed signs of down syndrome.  I didn't really know what to think.  Should I be angry, upset, happy?  Then I started hearing stuff about kids with down syndrome, and that's when I became upset.  I had this perfect idea of a little sister.  We would do make-up, hair, go shopping, talk about boys, and everything sisters do, but so far nothing matched up with my idea of what I thought she should be.  The next week I started realizing that even though she wasn't perfect in the world's eyes, she was in God's, and my dad asked me how I felt about it.  So I told him, "Obviously this is what God wants.  I mean we prayed so hard that she wouldn't be down syndrome, and she is.  If God had wanted her to be anything else, that's what He would've done, and I would rather have a sister that is in God's plan and not so perfect to the world rather than a sister out of God's plan and perfect to the world."  We had prayed about it and learned that she was going to be a bigger blessing to us than we ever could imagine.  Then about 4 months later we learned about her skull.  That hurt more than the down syndrome, because I had thought that if I accept her just the way she is and love her because she is still perfect to me then God will see that and nothing else bad will happen, but it did.  Why would God make a baby so perfect have this problem?  He knew how excited I was about having a little sister.    
I had talked to Mrs. Megan about it and she told me that this would be hard, but in the end it would be an incredible testimony.  That's when I started feeling a peace about it.  I didn't and still don't know exactly why it had to happen this way, but God knows exactly what he is doing.  People pray, "Let them have a peace that passes all understanding."  I didn't really know what that meant until yesterday in the waiting room.  Even though Harper was in surgery I wasn't worried, maybe a little bit anxious for her to get out though.  She is the most beautiful, sweet baby to me and I wouldn't change anything about her.  I'm excited for her to grow up so I can see how she will touch other peoples lives.  I'm not really sure if this is what my dad wanted, but it's too late now.
                       --Kara

Success

I thought I posted a few hours ago, but Kara tried to add a photo and the rest is history.  Sorry, but I still love her.  So lets try this again. We arrived at the hospital at 5:30 A.M. and after all the preliminaries surgery finally began at 9:10.  Ninety agonizing minutes later we finally got the call that they were through and all was well.  Dr. Jimenez told us the metopic suture was the hardest of the sutures to fix, but the new tools he and his wife used worked like a charm.  Brook will not leave her side and is now holding her.  Harper cries out in pain some and it's more than this daddy can take.  Hopefully this won't last long.  She will remain in PICU all night, and if all is well we will take her to the motel tomorrow.  Thanks for all the text messages but most of all the prayers.
--Mark

One of my concerns is that Harper hasn't pooped in several days. Wai-Yee recommended having her do this before surgery. The picture is of her eating prunes; I think she enjoyed them. We'll wait and see what happens.

This has been a really long day. Harper had appointments all day today.
We met with a research nurse first; she was asking for our consent for Dr. Jimenez to keep the bone he will remove from her forehead. There has not been much research done on craniosynostosis, so he requests to keep the bones and other data he collects for research purposes. The nurse, Wai-Yee (pronounced "why"), went over our surgery times and procedures. Harper is first! Thank you, Lord. We report at 5:30 AM and surgery is scheduled for 8:00. It will take approximately an hour.
Next, we met with Darren, the helmet guy. He put her in a laser scanner and scanned her head. This was just for outside measurements. He also took manual measurements of her head. We will go back Monday after her surgery for him to do the same thing, then they will make her helmet. The helmet will touch parts of her head and have quite a bit of space in others. This way as her head grows it will follow the path of least resistance. When the fused portion is opened up in surgery and the helmet is worn, it allows her head to correct itself naturally as it grows.
This afternoon we met with Dr. Jimenez. He was very nice, and didn't make us feel rushed. If we learned anything new, I can't remember it now. He went over some of the same information as the others and took time to answer any questions we had.
We also met a couple from North Carolina today. They were here seeing Dr. Jimenez for their final checkup. I meant to take my camera today, of course, I forgot it. I will try to put up pictures in a few days of the map hanging in the hall. People come from all over the US and different parts of the world to have Dr. Jimenez operate on their baby.
If everything goes well, she will be dismissed Friday. We will spend tomorrow night in PICU, and hopefully be dismissed the next day.
Thank you for your prayers. So far, we are making it. I know all the prayers for us is carrying us through. I do not look forward to tomorrow, though.
Much love, Brook

Lamentations 3:22,23 Because of the Lord's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness.

I went and gave blood for Harper today. We also went and found the pediatric unit where we will be going. We did lots of walking (construction everywhere).  For some reason this has been a really hard day for me. Just being in the hospital and seeing everything was very difficult. I was told a blog was to share our feelings so here goes. My trust has been and always will be in our creator Jesus Christ but today He felt so far away. That peace that has carried me so far was hard to find today. I'm just human and so imperfect. I can't even come close to imagining what God went through watching His Son suffer for me. But no matter what we face I will put my trust in him. This is just our 3'rd night and I'm ready to come home. We miss our family, our church and our school. We love you all and covet your prayers.
      Mark

We made it.

Well, we made it! Harper did not cry one time in two days of travel! We spent the night in Hillsboro, just south of Waxahachie. Today, we stopped at the outlet mall in San Marcos, about 45 miles north of San Antonio. Harper needed a new pair of shades. We found our hotel and then went driving. We are about 2-3 miles from the hospital, and the helmet place is right here, too. Walmart is also about 2 miles from our room; it is the biggest Walmart I've ever been in. Yes, we already went tonight.
Kara is a great little momma. Chandler, well. . .Chandler makes me nervous. He tells her that her stroller is a race car and drives it accordingly, popping wheelies and all. He pops a wheelie, and says, "Look at her eyes when I do that, momma." Kara and I took the stroller back over.
Tomorrow, Mark will give blood. If Harper needs blood, they will have Mark's to give her.

Isaiah 41:13 "For I am the Lord, your God, who takes hold of your right hand and says to you, Do not fear; I will help you."  Thank you, Jesus. He is.

leaving tomorrow

Yesterday, Josh & Carmen Keith called; they were on their way home from San Antonio. Josie got her new helmet this week. We went over to Carmen's mom and dad's house to see them for a little while. They showed us pictures of where all we would be going, and explained more about Josie's helmet therapy. We got the girls together for a picture. Josie was so sweet--giving Harper kisses. Harper's helmet will be like Josie's. It may not be identical but it will be similar. God has allowed us to follow in someone's footsteps that we know--that is such a blessing for us. I'm sorry it wasn't that way for the Keith's.
I have my glue gun ready so I can put velcro dots on Harper's bows and attach them to her helmet. (Carmen also gave me bow tips for the helmet, and told me the towns with the best outlet malls!) Chandler will not get to decorate her helmet. His idea is to put a face mask on it and attach cup holders to the sides for cups of milk.
We are leaving in the morning. We only plan to go to the other side of Dallas tomorrow, and then go on to San Antonio Sunday morning. I didn't want to wear Harper out by being in her car seat for so long by making the trip all in one day.
The Giboney's brought over snacks tonight that the 8th and 11th grade Harding girls gathered for us. We decided to tie Chandler on top of the van so we could take all the food. Poor Chan. He is soo mistreated.
Thank you, girls!

Much love, Brook

Psalm 91:11 & 15   For he shall give his angels charge over thee, to keep thee in all thy ways.
     He shall call upon me, and I will answer him: I will be with him in trouble; I will deliver him, and honor him.

Last Sunday Night as I stepped out of my office Grant, Isaiah and Abby Lawson came running to me holding an envelope. They had worked that afternoon selling candy to help Baby Harper. It was so sweet but at the same time so humbling. As I tried to explain to Katie my feelings she said," you have taught our kids to serve, you just didn't expect it to be for your family". So many have given to help us with this journey and saying thanks seems so inadequate. I guess maybe its my pride but receiving so much has been very..... I  guess difficult but at the same time very very much appreciated. After sitting here for 45 minutes trying to put my feelings into words, I noticed the bottom of the photo above and it sums it up as his word always does "I thank God for you". And we do.
     Mark

Harper had her appointment with the genetic doctor at Children’s Thursday morning last week. (This was an appointment our pediatrician had set up right after she was born.) He said she was doing really well. Her muscle tone is good; therefore she may not be delayed in her milestones of sitting up, crawling, walking, etc. This is a big deal for babies with Down syndrome. At our first appointment with the genetic counselor, she said it usually takes DS babies twice as long to reach their milestones.  

The Down syndrome and Craniosynostosis are two unrelated issues. Harper just happens to have both. From what Mark & I have read Craniosynostosis happens about 1 in 2500 births. I was surprised it was this frequent. Down’s happens about 1 in 100 for mothers my  age, I believe. (I had that advanced maternal age, Mark would say. He referred to it like it was something I had caught J.)

Everyone we have ever encountered at Children’s has been wonderful. But this time, I felt my feather’s ruffle when the genetic counselor commented on how much cuter Harper was this time than when she saw her last. What kind of comment was that? J She was VERY cute at 3 weeks.

Thank you for praying about the insurance situation. Last week was a hard week until we got our approval letter in the mail. Monday we received an email from the hospital saying the insurance had denied the procedure. Mark then began calling to see what we needed to do. He finally got a hold of someone at the insurance company that told him we needed to file an appeal; so he did late Monday afternoon. (Someone at ins also told him they thought it would pay out of network. Tuesday morning they said no; it was denied--in or out of network.)Tuesday afternoon—hospital called to say it had been approved. The insurance would send us a letter. Wednesday—no email from insurance so Mark called to check. They had no record of it being approved. Mark then called the hospital; they thought it was two different departments in the insurance company that hadn’t gotten word to one another. Thursday—received a confirmation number of insurance approval—Wooohoo! Friday—got a letter in the mail saying insurance had denied the procedure. We noticed it was dated Monday, but not before our hearts had stopped, once again. Saturday—another letter dated later in the week confirming insurance approval. What an emotional roller coaster! Mark did all the calling and emailing-- He talked to everyone he could think of including the governor’s and a Senator’s office trying to get her surgery covered.  Thank the Lord this much is behind us.

I am starting to pack a few items. We leave next Saturday. Harper won’t be at church any this week. I am trying to keep her from being exposed to too many germs.  Thank you for your continued prayers.

  Much love, Brook