Wordless Wednesday

Hubby is coming home from work TOMORROW which means I have to get the house into a recognizable form TONIGHT.

With that said I had a lot of cool posts planned but now I can get better pics for them! One of them was stuff I have/use for therapy for Little Man. I am always curoius as to what other people use and Owen's Mommy from fetalhydrocephalus.com did a great piece on what she used and how she modified baby equipment to fit Owen's needs & I wanted to do something along the lines of that. Plus we have some chickens that are cute & our neighbor's corgi is even cuter and plays with Capt. Chaos all the time and you all should those pics too. Anyways, The kiddos & I made a very special trip today to visit my "first born daughter". Daughter? I can hear alot of you saying... Carla does'nt have a daughter- or do I?

Hello There :)

LOL!

I do! I do!

Everyone who knows me, knows that I fully consider the above pictured horse "my first born daughter". Her registered name is "Miss Understood" (it siuts her wonderfully!) but I call her Emily. I consider her to be a "special needs" horse due to an abusive past. I bought her on May 8, 1998 (yes, I am dating myself) after I graduated college with a newly minted BPS in Equine Business Management. I thought I knew it all! I thought that I could ride any horse!

HAHAHAHAHA!

She's in her full winter whooly coat, but is'nt she purty?

I bought her with my Life's Savings to that date- $575 - at an "end of the road" auction (ironically named "New Holland") in the middle of Amish Country. She was 4 years old then & who ever had her before me did an unfortunate number on her & she has yet to really forgive the human race for it. It took me 4 years working with a very experienced & extrememly understanding trainer to get her safe to ride on the flat (thats walk, trot, canter for non horsey folks) in an indoor arena. I cannot thank you enough Ginna!!!! When she was 10 years old I bred her and got an awesome pony from her that my nieces are thoroughly enjoying & spoiling.

Now, that she is at the matronly age of 14, she is mellow enough to yawn in my company.

She lives at my friend Jodi's farm. Its a little over an hour's drive to see her & now that I have 2 kids in tow it makes it hard to visit her & I hav'nt ridden her since my 30th birthday, (!) way back when I still lived in MD (& was single for that matter) She has been enjoying her "retirement". One day, I'll have time enough to hop back on her & see if she can still keep me humble:)

Speaking of Jodi- she is amazing! She has 4 kiddos that she homeschools (my envy) raises chickens and beautiful horses (lots are for sale if anyone is interested...) on top of all that she also raises milk goats and makes beautiful soap!

If any readers out there like Goats Milk Soap -its the bomb, I just washed my hands with it!- contact her at:

Winestone Farms

winestone1@juno.com

Albert Einstein Didn't Have One Either

Our appointment to see the results of the CT scan went well. There was a lot more brain visible (yay!!!) Our neurosurgeon would like to see more and there is not a Corpus Callosum. We knew that there was a possibility that he did not have one since it didn't show up in any previous scans. Our Dr. says that sometimes it becomes visible after some fluid has drained & that is what he was hoping for. Because I had known that Little Man may not have one for sometime I wasn't too heartbroken over it. This is why:

While we were still in the NICU, I went through his "binder"- each baby had one & in it was all the noted the nurses & doctors had on that particular baby. These notes included test results & interpretations. As I was going through Little Man's binder I saw on one of his scan results "No corpus callosum visible" I knew it was a part of the brain but not much else. As I sat there getting myself worked up over a brain part that I wouldn't be able to pick out of picture one of his nurses came over to check on us. I asked her about thew corpus callosum & she told me in layman's terms that it connected the left & right sides of the brain. She must have figured out that I read through his paperwork (I am MOM after all & should be able to was my theory) She then said in her thick Brooklyn accent:

"It may sound terrible now, but you never know how they turn out until they turn out. You just do what you can do & remember all the good things he can do. Besides, Albert Einstein didn't have one either."

WOW- Albert Einstein didn't turn out so bad. That really made me feel alot better. So now, that I know he doesn't have one, I won't tear myself apart over it. I'll just keep on doing what we are doing and do the best we can for Little Man. After all, that s all I can do right? So we move on to the next issue for Little Man which are his head bones. We know that they are misshapen so now we need to get some opinions on whether or not they bones are overlapping and can move in to place on there own or if the are "stuck" and need to be surgically repaired. I am all for second, third fourth & so on opinions. I would rather be proactive and know that I am doing everything I can possibly be doing to help Little Man be all that he can be. (I'm starting to sound like the old Army ads!)

In the meantime, I will research the cranio-facial dr. recommended to us & research Constance's and continue on with Therapy. His Therapists are VERY HAPPY with what he can do. He can hold a toy, focus on a toy (or face) & follows alot better with his eyes. He can lift up his head about 4 inches off the ground during tummy time & wears his gloves to help his thumbs & shoes that I modified to help him find his feet. I'll post pics of what we do in the next few days. For now, I will enjoy the Christmas Holiday with my family!

You've Come Along Way Baby!

I need to catch family & friends up to speed on Little Man. This pic was taken shortly after we came home. No NG tube! He loved sleeping in hid boppy while he fit into it. Boppy pillows are great to have with Hydro babies I've found. It was a great thing for him to sleep in while he was still little. It gave great support to his head & neck & kept him slightly upright to help everything drain:)This is his Halloween/Thanksgiving onesie his Aunt Mary gave him. At this point he was still swimming in it. He fits it perfectly now. He is about 1 month old here & you can see that he is "scrunched up" He had tight muscles since birth & we have been working with him on that. At first it was hard to get him to stretch & relax but now he is much more lose with his muscles and on target for his age.Here is his adoring older brother "Captain Chaos". Fortunately we have gotten him out of the habit of climbing into the pack n play with him. Little Man was not to thrilled with him so close. Now Capt. Chaos knows to bring a stool over so he can see into his bed with out climbing in:) Here is Little Man at 2 months old. As you can see he is not scrunched up & rather enjoys waving his arms around. His wrists are still bent & his thumbs are folded in. He wears little gloves that hold his thumb out so his muscles will stretch out gradually. All this is to help him eventually hold objects. I especially love this pic because it shows off his luxurious locks! Its starting to fall out & blond hair is growing in so I have to get all these hair shots in while its still here!
Here is another shot of his hair/head. Its coming closer to "normal" although he still has a bit of a cone head. His Neurosurgeon calls it a "towering vertex". His head circumference is still off the charts. Its 38cm. down from 43 cm at birth. Its no longer getting smaller, so now his body will start to grow into it as the shunt keeps the CSF from building up any further. Little Man will be 3 months old on Christmas Day. We have come a long way from our days in the NICU. His PT says he is doing all the things a 3 month old should be doing. I still worry (don't all parents?)
I'll post more later. Right now, I have a tree to decorate & gifts to wrap! :)

Our Time In The NICU

Here is a pic of my Little Man after he was stablized in the NICU. He was already engaged in my pelvis so his head is more oblong than round. My doctors wanted to keep him inside as long as possible to allow his lungs to fully mature so he could have his shunt put in shortly after birth.

Here is another shot of his head. You can clearly se how swollen these babies are when they are born. The nurses told me he was resting comfortably. He did'nt fuss much at all & slept peacefully so I believed it because it made me feel better.

Here he is hours after his shunt surgery. I am always amazed at how quick his head shrunk. Here you can see how his skul bones are begining to overlap as they find their right place to be. His head changed shape several times duriong our 2 week NICU stay.

Here he is again about 1 week post op. You can still see his head plates over lapping. He also needed a feeding tube. Fortunately, the hydrocephalus did not keep us in the NICU for very long. It was his feeding & weight gain that kept him there!

It took time for his body to work the anethesia out of his system. He was groggy for a long time after the shunt was put in. This contributed to his slow eating & the subsequent lack of weight gain. He was born at 8lbs. 12 oz. dropped to around 7 lbs 10 oz. and stayed there for several days. He came home at 8lbs. after 2 weeks in the NICU.

Welcome To Holland!

WELCOME TO HOLLAND
by Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Welcome to my blog. I had to start this blog with this poem, one of my favorites since my youngest son was diagnosed at 20 weeks gestation with Hydrocephalus.

It was a bittersweet appointment. We found out we were having another boy & my doctor saw "a spot" on his head. She didn't say hydrocephalus yet. She had me come back in 2 weeks to see if the spot had changed at all. Oddly enough, I was not worried at this point. I was still Happy that I would have 2 boys! I was having so much fun with my first son I thought 2 sons would be heaven! (p.s. it is!)

I went back after 2 weeks and the spot was bigger- she said it could be hydrocephalus, but was sending me to a specialist- in Ft. Worth- to be sure. She moved quickly, having her office make the appointment for me. Hmmm, how nice of her was all I thought at that time.

She came back with the date & I remember that it was the same day as the first day of Vacation Bible School & had volunteered to teach the 3 year olds. I had not gone to VBS as a child so I was stoked to be going as an "adult". Also, Hubby was going to be away at work & unable to go with me. When I asked if it could be changed she told me it was to earliest appointment available & preferably she would have me go that day so I could get a better picture of my baby's head and a definite diagnosis. OK- Now I was nervous.

My father in law had to take me to the appointment since Hubby was out of town. I toyed with the idea of going alone. I'm just weird that way I guess. If Hubby can't be with me, I'd almost rather be alone:) For once, I didn't argue when my father in law offered to take me & in the end, I'm glad he did.

My new Dr. was Dr. Tracy Pappa- she resembles "Shirley" from the TV show "Laverne & Shirely" & I liked her immediately which was good because while I was waiting for her in the exam room I let myself lose it completely for 10 minutes. (FIL was in the waiting room, I did want to be alone w/ the dr. for any diagnosis) As she examined me, she confirmed that my baby had Hydrocephalus. She was very matter of fact with her description of it & how she could see no "cause" for it & could see nothing else wrong with the baby. She sounded very up beat about how things "could be". She stressed that there was no way to tell how his quality of life would be, but the best part was that NOT ONCE did she suggest that I terminate. That was so very important to me- I'll add that she did not know I was pro-life. At this point of my pregnancy I was at 22 weeks & had been feeling him move for about 8 weeks already. I could not possibly terminate something that was truly alive & moving within me. For me, it was never an option.

Dr. Papa then set me up with a pediatric neurosurgeon. She set us up with Cook Children's Hospital where we consulted with Dr. Donahue (who resembles Woody Allen!) & whose partner, Dr. Honeycutt would be putting in the shunt to drain his little brain of the fluid that has been building up. Both doctors were "cautiously optimistic" about my baby's recovery & outcome once his shunt was in place. Now, I had several doctors who never suggested termination:)

However, I still needed a dr. to deliver my baby since it was obvious I would be needing a C-section and we all wanted my baby to be born as close to the neurosurgeon as possible. Enter the most cheerful doctor I've ever met- Dr. Leslie Hardick. She understood my situation & my needs/wants & agreed to deliver my baby at Harris Methodist so he could be in their NICU, be wheeled over to Cooks (via sky bridge!) for surgery and go back to Harris to continue recovering in the NICU.

At this point, all the planning that could be done was done. All I could do now was, research hydrocephalus, watch his head grow bigger at each appointment, and pray. I did alot of praying. My family & friends did alot of praying and several churches did alot of praying. In the end, the prayers were answered. My baby boy was born as safely & healthy as possible Sept. 25th 2008 and was shunted the next day. Success!

All we had to do now, was get him healthy enough to get him out of the NICU. Tune in next time for that adventure!