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.