Home Again

We are back at home! Twelve hours is a long time to spend in a vehicle.

Harper finished her appointments with Darren and Dr. Jimenez, and we have her new helmet. It is slightly larger of course, and the plastic is thicker which makes it heavier, too. The first morning she woke up with it she sat herself upright in the bed and slowly made a circle with her upper body before laying back down. She did this twice, looking like a drunk, before flopping back down on the bed. I laughed out loud, it looked so funny. It may not have had anything to do with the helmet, but it looked like she was having a hard time getting it balanced. 

If everything goes as planned, this is her last helmet. Most babies go through 3 or maybe 4 helmets for their treatment, but Harper will probably finish in two. Darren said this is partly due to her having the surgery "late" (right at her 6th month birthday) and to her head growing slower because of down syndrome. But, they were very pleased with her progress. He made her helmet so that there is "wiggle" room to adjust if it gets too tight before January, when she is due to get it off. 

It is good to be home, but we are only here for two days before leaving for Southern Missouri to speak at their Kid's Camp for one week. Thank you all for your prayers, we love and appreciate you.

Blessings to you in Christ,

Brook

Family picture at Rain Forest Cafe. This isn't the best quality, It's a picture of a  picture.
You know a copy of a copy is just not the same.

   

On our way home, sporting the new hat. I will add the velcro for a bow tomorrow.  

Sea World and Schlitterbaun

Well we went to Sea World Saturday and to Schlitterbaun Water Park today. Sea World was miserably hot and crowded. We got to see a few shows and they were excellent, but a worker said it was their busiest day so far this season. I believe it. Today we went to the water park. Mark, Harper, and I parked in the shady kiddy area while Chandler and Kara went to ride the big rides. It was wonderful. we didn't move away from our little picnic table and lounge chair all day. Harper "warmed up" to the water so that she enjoyed getting wet. She also met a little bald headed 10 month old man dressed in a full body superman swimsuit. I believe she was slightly love struck and so was he, but after she tried giving him two open mouth kisses we didn't see him anymore. Oh well. She also got another bowl of dipping dots today. Her third this week. I think dipping dots is her new favorite food. She can eat the whole bowl by herself--and she did.We'll be back in the "real world" with no dipping dots when we get home. This is vacation. 

She was measured for her helmet this morning and we will pick it up tomorrow at 1:00. Darren (the helmet guy) will custom fit it to her head and face then. We was very pleased with the progress she had made. He said the space where the bone was removed had opened up about 1 1/2 cm. This is from the front part of her brain growing and expanding as it should now. Darren said she could go without her helmet for the day. (She was going to anyway, because we knew we were going to Schlitterbaun. But at least we were official today) It's getting late so I will try to post again before we leave. 

Mark wasn't too scared of water this deep. 

Kara and Harper at the top of the baby sized water slides. The drip at the top was what Harper enjoyed the most.

The bathing beauty. I realized today that she has a better tan than I do.

She was playing at the vent where the water bubbled out. 

I always knew she could "take" bubba.

What is the saying about kids? Something about watching your heart walk around outside of your body.
I've heard down syndrome people have the purest hearts of all.
It's hard to believe the things she has already brought to my attention that needs to be changed in my own life.
There is no reason God hasn't given up on me except for His grace.
 

In Christ.
God's blessing to all of you again,  Brook

Six Flags

Harper loved her first bowl of dippin' dots! I'm not sure why
one eye is open wider than the other, except this was
nap time.

We spent the day at Six Flags today. Thank you My Coke Rewards. We had a great time but were  sure glad to get showers at the end of the day. It is about the same temperature here as at home. It actually may be slightly cooler. Harper does wear her helmet all the time, but temps in the mid to upper 90's at Six Flags is too hot for me to make her wear it.

Sisters.

We were trying to get her to look at the camera, and when Mark grasped her arm she waved. 

Chandler and Kara took Harper on her first carousel ride.

 Takin' it easy. Harper likes to prop her feet up and recline in her stroller.

 Chandler and Kara takin' a break in the air conditioning.

Back in San Antonio

We made it into San Antonio last night. It's hard to believe that it has been 5 months since we left here. We will have appointments beginning Monday for Harper to be fitted for a new helmet. She has outgrown her first one. Her forehead is looking so good; the change is really surprising. Thank you for those who have prayed for us over this last year. We couldn't have survived without the Lord's help.
Harper never has acted like her helmet bothers her. At first I was so aware of how different we looked in public, but now it is just a part of her. It's what she looks like. I sometimes realize "Oh yeah, we do look odd" when we walk into a restaurant and a wave of heads turn to watch as we walk by. Most people are very friendly about it, some ask if she had surgery. Some just ask why she has it, but for the most part they just don't comment. The best question was from a young guy who wanted to know if she just had a perm. I'm sure I looked puzzled when I realized he was talking about Harper, and he was serious. I politely told him she had had surgery, and then got a good laugh when he had gone.
Harper went for her first swim in a "real" pool here at the motel today. She wasn't impressed. She clung tightly to us and didn't smile much. Of course, we were snapping pictures and making quite a spectacle. Everything Harper does is so great. "She grinned," "she slapped the water," "she let go of my swim suit with one hand." I wonder if she will be rotten a year from now. We also went to Rudy's barbeque tonight and Harper enjoyed her first rib bone. Chandler said she looked like a dog gnawing on it. Seems like just last year, I remember Chandler toothlessly gnawing a whole pile of rib bones. (Mark used to smoke ribs often for the two of us. Not so any more. Ribs are too expensive to try to fill 2 adults, a teenage girl, and a bottomless pit up on.) Mark & I discovered Rudy's in February, and Mark wanted to bring the kids this time. The restaurant is in a gas station--no kidding. You receive your meal in a coke crate and get butcher paper for plates. It is really good-it seems to be "the place" for locals.
Harper is doing well in her development. She rolled over at 4 months. She could sit up in her 6th month, and she could get herself in the sitting position in her 9th month. She pulled herself up to the standing position in the crib for the first time Tuesday morning. She is not crawling yet. Her physical therapist said if "it isn't her idea, it's not a good idea." So far, crawling is not her idea. She can drink out of a straw really well--speech therapy at work. She just doesn't always like to swallow what she sucks up through the straw. And she is a pro at blowing raspberries--while she eats. The genetics clinic said to expect her to take twice as long to meet her milestones because of the down syndrome. So far, she is doing much better than that. I think she is quite brilliant. She has trained her whole family to enjoy doing what she wants. So much for having kids in "old age".
We will try to post some pictures while we are here this week.
God's blessings to you.
Brook

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.