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Tuesday, November 11, 2008
HAPPY VETERAN'S DAY UNCLE BRYAN AND ALL OF YOU WHO FIGHT/HAVE FOUGHT FOR OUR FREEDOM HERE IN AMERICA. WE THANK YOU AND LOVE YOU FOR GIVING SO MUCH!!!
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***Alert, if you donated to Reece’s Rainbow in honor of Janna’s birthday, you played a vital role in the story below!***
THANK YOU SO MUCH!!!
First I would like to provide an update on Vika (short for Victoria), the 2008 February Child of the Month from Reece’s Rainbow. I mentioned in the last journal that Vika was being adopted. She came home to the states from Ukraine on October 1st to her forever family. Vika now has a new name, (Katie), as well as a new family. She is doing great and loves her new siblings. Katie’s new family was set up to adopt a young baby girl but God laid it on their hearts to bring Katie home. Katie would have been transferred to a mental institution in January (when she turns 4) but now she is out of her crib, in another country, and with a loving family. All of the kids in baby houses (orphanages) are sent to mental institutions when they turn 4 or 5. Most of them don’t live for more than a year after the transfer.
So, not only do we now know where Vika/Katie is, we actually got to meet her in person last month! Isn’t God amazing!? Let me explain how it came to pass that Janna and I got to meet Katie. It was hard choosing a child to sponsor with Janna’s birthday money and some money that we sent in honor of her therapists/teachers. There are SO many kids needing a family! We finally decided on the February Child of the Month (Janna’s birthday month). The child was named Vika and we thought she was a boy because of the short hair in the picture. The day the photo was taken, little Vika was upset and crying and they could not get a good picture. She looked frail, pitiful, and very sad. In fact, here is a close-up of that very picture;
This picture was not allowed on Reece’s Rainbow except for the month of February 2008 and for the Christmas Angel Tree Project of 2007. I never saw this picture except during February and never again after February 2008, until recently. But it has ALWAYS stayed in my mind. Katie’s new mom and I both visit a site that supports parents/families raising kids with Down syndrome. When Katie was adopted, of course her new mom for life posted a picture and story sharing that Katie was now home with them in NY. This is the picture she shared;
Quite a big difference in the pictures, eh? Well, not in my mind. God showed my eyes Vika when I saw this picture of a smiling girl in bright pink pajamas. I really suspected that it was Vika! And of course I found that it was, once I asked Katie’s mom. Although I thought Vika was a boy, I still asked and sure enough Katie IS Vika, the 2008 February Child of the Month. I was ecstatic, I could NOT believe it! Vika was home and with a wonderful family. She escaped a mental institution and we played a small part in bringing her home. You played a part! Thanks so much to ALL of you who donated money to Reece’s Rainbow in honor of Janna’s birthday. Your money was well spent. Katie escaped life in a crib where orphanage caretakers do not have time to provide much more than necessities. She is HOME with her forever family and we get to know about it! Just days after finding this out, we discovered that Katie and her new family would be taking a vacation to the beach in NC. Yes, NC! They make this trip every year. So, sure enough, Janna and I drove to the beach on a rainy October Saturday and met Katie (Vika) and her new family in person. Only God could write a story like this!? We had the best time visiting with Katie and her family. She has two brothers and one sister who also happen to have Down syndrome and she has two other sisters too. She has two first cousins who are brothers, one having Down syndrome and also adopted through Reece’s Rainbow. And she has an Uncle (her mom’s brother) who is 26 and happens to have Down syndrome. We got to meet everyone! It was quite a wonderful day and one that I will never forget. Janna had the best time playing with Katie and all of her siblings/cousins. I will post lots of pictures below of our visit with Katie (Vika).
And I must share this; When Katie eats, she giggles and laughs the whole time. We got to see her giggling while eating. Why, you may ask? Because Katie has discovered that she gets enough to eat now. It doesn’t run out before her tummy is satisfied. In Ukraine there was never quite enough to fill Katie up. As you can see she is much smaller than Janna although she’s a month older. But Katie is getting her tummy full these days. In fact she probably has never been so full of food, love, happiness, and all of the things that every child deserves.
If you would like more information about adopting one of the precious children from Reece’s Rainbow (www.reecesrainbow.com), please let me know and/or use the link above to help a child financially so that someone else can afford to adopt them. As Katie’s mom put it, “There are few things in life as rewarding as helping one of these children find a family.” And if you can’t adopt or help financially, please join us in praying for the many children who are waiting for a forever family.
"Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the world".
James 1:27
Our day with Katie and family;
Janna, me, and Katie!
Beautiful Katie! Isn't she the sweetest!?
Katie and Janna playing with some of their favorite toys - things that dangle :) 
Katie trying to get to Janna.
BIG HUGS!
Chilling out with Uncle Stephen, another sweetheart.
Katie leaning in for a love with her new Mom for life!
Janna playing with Jane (Katie’s oldest sister). They loved each other!
Janna feeding Michael (Katie’s brother) a baby doll bottle!
They both thought it was hilarious!
Beautiful little Myia was a little under the weather but still had a sweet face for everyone. Myia is Katie’s sister and was adopted about 5 months ago.
Handsome Alex! Katie’s brother.
And cute little David, Katie’s cousin that was adopted from Reeces’ Rainbow (Serbia) about 5 months ago.
Matthew (Katie’s cousin, David's new brother) and Janna with big hugs!
Janna giving Alex a nice hairstyle! Little David in bottom of picture. 
More of sweet Katie...
Janna and Michael (Katie’s brother) scheming on calling overseas with the play phone. These two are a lot alike and hit it off great. They would be quite a pair together.
Beautiful Sara! What a smile! Katie’s sister.
Doesn't she remind you of Shirley Temple?
Janna joined right into the family. Katie’s grandad playing with all the kids.
And she felt sorry for Michael so she put herself in time out for a little while after his time out.
Good-bye hugs…
Just seconds down the road...
I will be adding more pictures from the Buddy Walk last month real soon. Janna had a wonderful time and surpassed her fundraising goal this year. Thank you for helping her get there!!! aj
Tuesday, November 11, 2008
***Alert, if you donated to Reece’s Rainbow in honor of Janna’s birthday, you played a vital role in the story below!***
THANK YOU SO MUCH!!!
First I would like to provide an update on Vika (short for Victoria), the 2008 February Child of the Month from Reece’s Rainbow. I mentioned in the last journal that Vika was being adopted. She came home to the states from Ukraine on October 1st to her forever family. Vika now has a new name, (Katie), as well as a new family. She is doing great and loves her new siblings. Katie’s new family was set up to adopt a young baby girl but God laid it on their hearts to bring Katie home. Katie would have been transferred to a mental institution in January (when she turns 4) but now she is out of her crib, in another country, and with a loving family. All of the kids in baby houses (orphanages) are sent to mental institutions when they turn 4 or 5. Most of them don’t live for more than a year after the transfer.
So, not only do we now know where Vika/Katie is, we actually got to meet her in person last month! Isn’t God amazing!? Let me explain how it came to pass that Janna and I got to meet Katie. It was hard choosing a child to sponsor with Janna’s birthday money and some money that we sent in honor of her therapists/teachers. There are SO many kids needing a family! We finally decided on the February Child of the Month (Janna’s birthday month). The child was named Vika and we thought she was a boy because of the short hair in the picture. The day the photo was taken, little Vika was upset and crying and they could not get a good picture. She looked frail, pitiful, and very sad. In fact, here is a close-up of that very picture;
This picture was not allowed on Reece’s Rainbow except for the month of February 2008 and for the Christmas Angel Tree Project of 2007. I never saw this picture except during February and never again after February 2008, until recently. But it has ALWAYS stayed in my mind. Katie’s new mom and I both visit a site that supports parents/families raising kids with Down syndrome. When Katie was adopted, of course her new mom for life posted a picture and story sharing that Katie was now home with them in NY. This is the picture she shared;
Quite a big difference in the pictures, eh? Well, not in my mind. God showed my eyes Vika when I saw this picture of a smiling girl in bright pink pajamas. I really suspected that it was Vika! And of course I found that it was, once I asked Katie’s mom. Although I thought Vika was a boy, I still asked and sure enough Katie IS Vika, the 2008 February Child of the Month. I was ecstatic, I could NOT believe it! Vika was home and with a wonderful family. She escaped a mental institution and we played a small part in bringing her home. You played a part! Thanks so much to ALL of you who donated money to Reece’s Rainbow in honor of Janna’s birthday. Your money was well spent. Katie escaped life in a crib where orphanage caretakers do not have time to provide much more than necessities. She is HOME with her forever family and we get to know about it! Just days after finding this out, we discovered that Katie and her new family would be taking a vacation to the beach in NC. Yes, NC! They make this trip every year. So, sure enough, Janna and I drove to the beach on a rainy October Saturday and met Katie (Vika) and her new family in person. Only God could write a story like this!? We had the best time visiting with Katie and her family. She has two brothers and one sister who also happen to have Down syndrome and she has two other sisters too. She has two first cousins who are brothers, one having Down syndrome and also adopted through Reece’s Rainbow. And she has an Uncle (her mom’s brother) who is 26 and happens to have Down syndrome. We got to meet everyone! It was quite a wonderful day and one that I will never forget. Janna had the best time playing with Katie and all of her siblings/cousins. I will post lots of pictures below of our visit with Katie (Vika).
And I must share this; When Katie eats, she giggles and laughs the whole time. We got to see her giggling while eating. Why, you may ask? Because Katie has discovered that she gets enough to eat now. It doesn’t run out before her tummy is satisfied. In Ukraine there was never quite enough to fill Katie up. As you can see she is much smaller than Janna although she’s a month older. But Katie is getting her tummy full these days. In fact she probably has never been so full of food, love, happiness, and all of the things that every child deserves.
If you would like more information about adopting one of the precious children from Reece’s Rainbow (www.reecesrainbow.com), please let me know and/or use the link above to help a child financially so that someone else can afford to adopt them. As Katie’s mom put it, “There are few things in life as rewarding as helping one of these children find a family.” And if you can’t adopt or help financially, please join us in praying for the many children who are waiting for a forever family.
"Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the world".
James 1:27
Our day with Katie and family;
Janna, me, and Katie!
Beautiful Katie! Isn't she the sweetest!?
Katie and Janna playing with some of their favorite toys - things that dangle :) 
Katie trying to get to Janna.
BIG HUGS!
Chilling out with Uncle Stephen, another sweetheart.
Katie leaning in for a love with her new Mom for life!
Janna playing with Jane (Katie’s oldest sister). They loved each other!
Janna feeding Michael (Katie’s brother) a baby doll bottle!
They both thought it was hilarious!
Beautiful little Myia was a little under the weather but still had a sweet face for everyone. Myia is Katie’s sister and was adopted about 5 months ago.
Handsome Alex! Katie’s brother.
And cute little David, Katie’s cousin that was adopted from Reeces’ Rainbow (Serbia) about 5 months ago.
Matthew (Katie’s cousin, David's new brother) and Janna with big hugs!
Janna giving Alex a nice hairstyle! Little David in bottom of picture. 
More of sweet Katie...
Janna and Michael (Katie’s brother) scheming on calling overseas with the play phone. These two are a lot alike and hit it off great. They would be quite a pair together.
Beautiful Sara! What a smile! Katie’s sister.
Doesn't she remind you of Shirley Temple?
Janna joined right into the family. Katie’s grandad playing with all the kids.
And she felt sorry for Michael so she put herself in time out for a little while after his time out.
Good-bye hugs…
Just seconds down the road...
I will be adding more pictures from the Buddy Walk last month real soon. Janna had a wonderful time and surpassed her fundraising goal this year. Thank you for helping her get there!!! aj
Wednesday, October 8, 2008
Once again, it has been TOO long. But I’m finally getting around to another journal entry. I’ll try to keep it short and give you lots of new pictures. Janna is doing great and loving that school is back in. There are five kids in her class so far this year, three from last year and a new little boy who just started last month. Janna and Hailey are two tough girls and holding their own as it’s them and three active boys. She is exploding with more words and has started going to Speech Therapy twice a week now to try and get all of her words under control : ) It is so exciting to hear her talking so much more lately!!!
Janna recently started on a Prescription Claritin Syrup – another to add to the morning mixture of Yogurt Medicines. Her nose has ran since the beginning of September – sorry that I passed down those allergies to you baby girl. It’s amazing that she will continue to eat yogurt now that we doctor it up so much. But it’s her choice – it would be such a terrible battle, twice daily, for her to simply swallow her medicines : ) But, she’s GROWING again. The extra Zinc is helping. Janna is up to 32 pounds and getting taller.
Just want to remind you all that the Buddy Walk is THIS SUNDAY in Raleigh. It’s not too late to come and walk with Janna. Click on her Firstgiving Fundraising Page above for more information and directions to the park in Raleigh. You don’t HAVE to register early – you can register the day of the walk. We are so excited that the Signing Times crew will be there to perform. Although Janna rarely uses sign language anymore, it sure was a life saving communicator for the past couple of years, for her and us. We are so blessed with all of the support that there is now for exceptional kids.
I have WONDERFUL news for those who donated to Reece’s Rainbow (back on Janna’s birthday in February in lieu of birthday gifts) and for all of her teachers/therapists that we gave monies in honor of this past year as well. We chose the February Child of the Month to donate all of Janna’s money to – this helped with the adoption fees for this particular child. This child, Vika, from the Ukraine, was adopted in August of this year! Vika now has a new name and most importantly a loving, forever family! It gets better, but I will not tell all yet. I will be posting a very special entry soon to provide more information on this special child, who was once called Vika. God is SO amazing!!!
Okay – enough from me. To the PICTURES!!!
I’m backing up here – these are from July. Janna enjoying her critters and wagon.
How do I make this thing ‘GO’!?
Getting down on their level : )
Tired out from Summer Camp (Kidz Dayz) The Picnic on August 7, 2008.
But not too tired to try and swipe daddy’s pocket knife : )
Janna’s hand prints on quilt.
Kidz Dayz Summer Camp 2008 Mrs. Sonja’s Class Quilt 
‘Helping’ mama make Key Lime Pie! Ummmm!
Our great adventure of August – FIRE ANTS!!! Janna only got about 40 bites/stings before I could get the ants off of her and sling her shoe away – YIKES! And as long as no one looked at her ‘boo boo’ or talked about it, she was fine. We thank God for Benedryl and that she wasn’t allergic to them! I saw her scratch only twice about 2 days after the fact. She still has marks and scars and it’s October! What a tough cookie.
Helping pick up pecan limbs – September 8, 2008. Janna is a big helper!
Having fun with cousins, Tara and Caroline, and trying to do everything that they do.
Caroline – proud to have found a kitty!
Janna feeding hay twine to a kitty.
The kitty’s ruined the jumping rope with twine attempts : ) Tara, Janna, Caroline.
Trying really hard to jump rope!
Janna is blessed with many sweet cousins. Tara, Janna, Caroline and Mr. William Johnson’s tractor, ready to spray the tobacco.
All of the Critters…
Lazy Bones Thomas
Thomas once again, disturbed from a nap.
Max – he’s really grown up in the last year, not acting so much like a teenager any more.
Max is almost 6 years old and is a true free-spirited pony.
The kitty’s think that they are ponies too ; )
Pretty boy Mitch doing what Mitch does best – EAT!
Macie and Gracie – also think that they are ponies.
We’ve helped Mitch trim down a little – his belly used to stick WAY out on the sides! Mitch is like an old shoe – whatever is fine with him and he loves Janna very much as she does him. Mitch is around 15 years old.
Joe and I were able to take a little vacation recently. Janna stayed with MeMa and PaPa for a couple of days and then with Grandma and Grandpa for a couple of days. She missed us but was a good girl while we were gone.
Welcome to Person County, where there is a whole lot of ‘QUIET’!
Hyco Lake 
To the right you can see ‘Turtle Rock’ sticking up. 
Here’s a closer view of Turtle Rock. We hope to bring Janna next time so that she can play in the water at Turtle Rock and maybe go kayaking with us. 
Joe fishing real early one morning - fishing - the ONLY reason he’d get out of bed early.
We both caught a Bass a piece, using a ten inch worm : ) Mine happened to be the biggest : ) although we didn’t weigh either.
Joe’s fish.
Joe holding my fish – he had to see how it felt : )
Whitley Church Fall Festival September 20, 2008
Janna enjoying a puppet show from a great view.
And playing ball (balloon) with ‘Aunt’ Peggy.
DON'T FORGET - BUDDY WALK THIS SUNDAY (10/12)!!! COME IF YOU CAN - THE WALK WILL NOT START UNTIL 3:30/4:00. YOU DON'T HAVE TO BE THERE FOR THE LUNCH, FUN, SIGNING TIMES PERFORMANCE. PLEASE COME AND WALK WITH JANNA. SEE FIRSTGIVING PAGE ABOVE FOR MORE INFO.
Tuesday, August 12, 2008
Last week Janna ended Summer Camp with a bang - they provided a family picnic following the last day and we all attended, including G-ma and G-pa Best. Then we had to rush off to Duke for 2 routine appointments. At her eye appointment Janna got an overall excellent report (awaiting details). Then we visited the Down syndrome Clinic where she saw Dr. Worley for the first time in nearly 2 years (cancelled her 1 year appointment due to heart surgery). He was very pleased with Janna's overall health and development and smiles. She really took to him as soon as he walked in, white lab coat and all? Maybe she knew he had no needles in his pockets! She also participated in an Eye Screening Study and did a great job of placing her head on the padded equipment while they took pictures of her eyes. We thought it was going to be a tough task but she played right along and held still for the flashes in the dark room while on daddy's knee. We were so proud! If only she'd been as good for the eye doctor - LOL! She did do well with naming pictures at the Eye Clinic but she wanted no part of the doctor looking into to her eyes with the little lights.
Here are more Summer pictures that I promised;
These sunglasses didn’t last long…
Ooooooo…Daddy splashed me!
Enjoying her Sprinkler & Slide
Hmmm..Looks like daddy’s gonna get me again with that water!
Don’t come any closer mama…she thoroughly enjoyed spraying us!
Daddy sure makes this fun!
And Janna absolutely adores her daddy!
A lil’ dirt never hurt!
Un, two, wee, schaump! Janna’s teacher says that Janna speaks French when saying the word ‘Jump’ : )
Balancing…
Almost there…
Oooooo, I made it!
Some Sandbox Fun!
The Smokehouse Stomp!
It’s just about TIME for a bath!
Sunday August 3, 2008
NOTE: Little Emma (Emma's Hope above) is now home and doing well. May God continue to bless her and her family.
Janna got an excellent heart report at her cardiology appointment on July 11th. I have not had time to update but we are so thankful and continue to give God ALL of the praise for the work He is doing in her life. The Mitral Valve leak is now considered Moderate to Mild, so it has improved!!!
The blood work drawn that day showed that she is a little dehydrated and also that her Zinc levels are low. So, we have switched vitamins (not all kids' vitamins contain enough Zinc, if any.) Dr. Milazzo was concerned that she had not grown in the last 6-8 months. She has grown maybe a little in height (she wiggles too much to get a good measurement) but she has been stuck at 30 pounds for awhile. So, from the blood work, they determined that her Zinc levels were the reason. The Endocrinologist at Duke says that even slightly low levels of Zinc can stall growth. So, we're on a mission to keep this girl growing. Thankfully she has started eating more meats lately and is more willing to try new foods, some days.
She is really enjoying Summer Camp which will end this week. She'll only a get a 2 week break before school starts back. She is also enjoying playing in the sprinkler on HOT weekends. I will add more pictures soon but will include a few to get you started.
Again, we are thankful for the thoughts, prayers, emails, questions, and overall concern for Janna. She is an on-going miracle and we thank God for choosing us to to be apart of her life. In His name, aj
Yes, she can still wear her Sufer Girl suit from 2 Summer's ago : )
MORE SUMMER PICTURES TO BE ADDED SOON!!!
Sunday, August 3, 2008
NOTE: Little Emma (Emma's Hope above) is having her heart surgery today!!! They found someone willing to give her a chance with this heart surgery. Please keep Emma and her family in your prayers. I will update as soon as I know anything about how today goes for Emma.
Janna got an excellent heart report at her cardiology appointment on July 11th. I have not had time to update but we are so thankful and continue to give God ALL of the praise for the work He is doing in her life. The Mitral Valve leak is now considered Moderate to Mild, so it has improved!!!
The blood work drawn that day showed that she is a little dehydrated and also that her Zinc levels are low. So, we have switched vitamins (not all kids' vitamins contain enough Zinc, if any.) Dr. Milazzo was concerned that she had not grown in the last 6-8 months. She has grown maybe a little in height (she wiggles too much to get a good measurement) but she has been stuck at 30 pounds for awhile. So, from the blood work, they determined that her Zinc levels were the reason. The Endocrinologist at Duke says that even slightly low levels of Zinc can stall growth. So, we're on a mission to keep this girl growing. Thankfully she has started eating more meats lately and is more willing to try new foods, some days.
She is really enjoying Summer Camp which will end this week. She'll only a get a 2 week break before school starts back. She is also enjoying playing in the sprinkler on HOT weekends. I will add more pictures soon but will include a few to get you started.
Again, we are thankful for the thoughts, prayers, emails, questions, and overall concern for Janna. She is an on-going miracle and we thank God for choosing us to to be apart of her life. In His name, aj
Yes, she can still wear her Sufer Girl suit from 2 Summer's ago : )
MORE SUMMER PICTURES TO BE ADDED SOON!!!
Sunday August 3rd, 2008
Janna got an excellent heart report at her cardiology appointment on July 11th. I have not had time to update but we are so thankful and continue to give God ALL of the praise for the work He is doing in her life. The Mitral Valve leak is now considered Moderate to Mild, so it has improved!!!
The blood work drawn that day showed that she is a little dehydrated and also that her Zinc levels were low. So, we have switched vitamins (not all kids' vitamins contain enough Zinc, if any.) Dr. Milazzo was concerned that she had not grown in the last 6-8 months. Maybe a little in height (she wiggles too much to get a good measurement) but she has been stuck at 30 pounds for awhile. So, from the blood work they determined that her Zinc levels were the reason. The Endocrinologist at Duke says that even slightly low levels of Zinc can stall growth. So, we're on a mission to keep this girl growing. Thankfully she has started eating more meats and is more willing to try new foods, some days.
She is really enjoying Summer Camp which will end this week. She'll only a get a 2 week break before school starts back. She is also enjoying playing in the sprinkler on HOT weekends. I will add more pictures soon but will include a few to get you started.
Again, we are thankful for the thoughts, prayers, emails, questions, and overall concern for Janna. She is an on-going miracle and we thank God for choosing us to to be apart of her life. In His name, aj
Yes, she can still fit in her Surfer Girl suit from 2 Summer's ago : )
MORE PICTURES TO BE ADDED SOON!!!
Monday, April 14, 2008
Janna and Joe updates;
Joe has recovered well over the last few weeks and went back to work this past Thursday. He’s been extra tired but overall is getting back in the groove. Janna had her neck X-rayed last Friday – this is just a precautionary thing. Kids with Down syndrome can have instability in their neck vertebrae and an X-ray is usually taken around their third birthday to rule out any cervical instability. We need this information also for her PE/PT at Pre-school. G-ma Best went with us and between the both of us we were able to keep Janna still long enough for the X-rays, although she wasn’t too happy about it. She did earn a sticker and a lollipop though. We hope to hear back from these soon.
Back in March we heard from Janna’s cardiologist. He confirmed the news that Janna does NOT need another heart surgery at this time. Here are his words;
I had Janna’s case reviewed by a friend and colleague from Charlotte, Dr. Resai Bengur, and the surgeon he works with. They felt as though they would not intervene on Janna’s mitral valve at the present time as her left heart is not very dilated. I agree with this plan.
We are so thankful for wonderful doctors and the abilities the Lord has given them as well as the dedication and concern we see in their work. Joe had a wonderful surgeon at Wake Med to take care of him last month also. We are so very blessed to have such good heart care in our area of the world.
We recently tried to get rid of one medicine (Prilosec) for Janna but her reflux showed back up strong. Most kids out-grow reflux, especially once they are upright and walking. But so far, Janna has not. She has had some trouble sleeping this week with a lot of coughing and refluxing through the night (even while reclined upright on me). We’ve switched her heart medicines to pill form but there is not a pill form of Prilosec in the dose that Janna needs. Her Pediatrician called in Prevacid and we started that Saturday. The reflux has calmed down some already and we hope Prevacid will work as well as Prilosec has for the last 2 years. So now we’re trying a new scheme to get all the medicines in - LOL. Janna is so slick, so every day is different. Some days she takes the crushed up pills disguised in a spoonful of yogurt or pears (after Elmo takes his) and some days she refuses. Then we mix it all in a container of yogurt and sneak it in that way. Even then she is suspicious and doesn’t always want the yogurt (which she loves). It takes a lot of coaxing some days. G-ma and MeMa took Janna to her 3 year well baby visit last Monday where she got a good report and an unexpected HepA vaccine. She’s dropped just a little in weight but is still hovering near 30 pounds and getting taller.
I have finally updated the Photo section here so check it out. Janna had a ball playing in the Spring rain recently – lots of pictures below.
Dr. Peyton (surgeon) taking out staples while commenting on Joe’s crocodile hunter shirt – Dr. Peyton is a card!
This is the face we get when we ask for a smiling picture these days! CHEESE!
Janna petting Gracie through the stall fence.
The WONDERFUL RAIN! (Thank you Lord!!!)
Signing to her reflection.
Catching rain drops. “If all the raindrops were lemon drops and gum drops………..”
I lost my shoe mama! (she really didn’t care)
Playing with her soccer ball – she loved dropping it and making the water SPLAT!
Running at the camera and cheesing.
Our Sleeping Beauty on her daddy’s childhood pillowcase, with Duckie of course!
Saturday March 22, 2008
UPDATE ON JOE;
The computers at Wake Med would not allow me to update Janna's page while we were there. Joe is home as of 10:30 this morning. We talked them into discharging him last evening and he stayed in the Heart Center Inn in the room we already had kept for last night. He woke up sick yesterday (from the pain medicines) and the Dr. felt he should stay another night. He did well all day so they allowed him to leave. We did find out that during surgery they had to put the paddles on him as his chest still has the circle marks. This is not that uncommon with the type of work they were doing to his heart. The defibrillator and the wires were changed out successfully. He lay in recovery all day Wednesday waiting for a room and that afternoon his heart started racing (blood pressure and heart rate getting fairly high). There was a lot of chaos in that area and Joe got a bit anxious waiting for a room in ICU. They feel that everything all together made his heart race and then he saw the monitor and could hear it racing and got even more anxious awaiting a shock. His heart rate got up to about 165 but his heart handled it on its own and he did not receive a shock. He has not had any more incidents like that although he does feel the device pacing him if his heart rate drops low. His resting heart rate is typically 59 so he will ask about them reducing the rate at which they have it set to pace him. He does not need any pacing. This is the only feature that we know of that is not set exactly as his old device was. He goes back on April 1st to see his surgeon and he will remove the staples that he got. We will also schedule an appointment with his electrocardiologist and find out more about his device. As we understand it, they will be giving us a small machine/box to sit in the house that wil collect data from his heart and automatically return that information to Dr. Campbell's office every 3 months - some technology, huh?! Unfortunately, Joe has been really sick today - to the point of throwing up bile (on the drive home from Raleigh). The pain killers have caused a lot of trouble and thankfully his pain is not so terrible today so he is not taking anything for it. Please pray that he can get his GI system back on track and soon feel better. He recently kept down some crackers and Ginger Ale. And he gets to take a 'real' shower tomorrow so I'm sure that will help. Again, we thank everyone for all the thoughts and prayers over this past week and we especially give all praise to our Father in Heaven for continuing to bless and provide miracles for our family. We are missing Janna really bad but it's best she continue to stay with Grandma and Grandpa Best until daddy is feeling better. I will go see her this evening for awhile. She's getting pretty good at talking on the phone to me : )
Wednesday March 5, 2008
First let me say a little about Janna since this is her page. She is doing great and still loving school and life in general. She battled the Croup a couple of weeks ago but got a steroid injection to help her beat it. She has a little cold again now but these things don't slow her down too much. We've all dealt with colds, bronchitis, and such over the last few weeks - guess we're all building immunity from starting Pre-school.
I wanted to provide an update on Janna’s daddy;
Joe is scheduled for surgery at Wake Med in two weeks. His pre-op work will be done on March 18 and we are to report for surgery at 5:30am on March 19. This is to replace his defibrillator (ICD), easier to say and type than Implantable Cardioverter Defibrillator, as well as to remove and replace one of the wires which runs from the device into his right ventricle.
For those interested in more details;
Joe’s ICD has been in since the Fall of 2003. So, the battery is running low. Easy enough – they unzip the small scar along with his chest muscle and replace the box. But it’s not quite that simple for him. When it was implanted in Wilmington, one of the wires was placed too far into his ventricle and may have even shifted some - to the point that it is pushing next to the wall of his heart, if not actually already penetrating it (they will know more once inside). The power to this wire was turned off a couple of years ago because of this – it would aggravate his diaphragm daily with a systems check. The wire is not supposed to be that close to his diaphragm. This wire is for pacing and Joe doesn’t need that (may when he’s older) so they just turned it off. Also, the ICD is a Guidant brand. You may have seen in the news over a year ago that this is the brand that had to be taken out of so many patients due to faulty issues. A Medtronic brand will be the replacement. Dr. Peyton (who trained at Duke with Joe’s Duke Cardiologist) is the only surgeon in this area that deals with extracting wires from the heart. He has consulted with a buddy surgeon in Florida who does these in that area and feels he is ready and able to handle this ‘not so usual’ task. It will be very tedious work since they will not be going in by open heart surgery. Dr. Peyton showed us the device in which he will use to basically rotor root/burn/burrow the wire out with, detaching it from the heart tissue that has grown around it. He will then place a new wire into the correct position – not so far out into the ventricle. The risk in all of this is perforation of anything in Joe’s heart. And that’s why it’s key to have Dr. Peyton around – he is a capable heart surgeon and can repair a heart should anything like this happen. We also found out yesterday that this surgery will require Joe to be on the ventilator – he was not expecting that and is a bit more anxious about it all now. Please pray for peace and calmness for him as he anticipates this upcoming surgery. We are VERY gracious to God that we live in an area that is quite advanced and experienced in cardio care. We really like Dr. Peyton and are comfortable and confident in his work. Mostly we trust that God is guiding and leading us in the best direction for Joe’s heart. When Dr. Peyton first saw Joe yesterday, he reached out to shake his hand and said, ‘How’s it going, Champion?’. You probably are not aware, but the heart defect that Joe was born with, (TOF) Tetrology of Fallot, is not a common defect and he only made it in to about a 10 year window of being born in a time when doctors even knew what to do with Tet patients. Every doctor that sees him is amazed at how well he looks and lives and is doing. God has blessed well beyond measure!
Tomorrow (March 6) is our four year anniversary. It’s been trying at times (health-wise) but such a wonderful journey thus far. I just want to say HAPPY ANNIVERSARY to my Champion – God has blessed me with such a wonderful life partner! I can’t imagine that I could ever deserve such a sweet person to share life with. I love you sweetie – you are such a wonderful husband and daddy to us. We pray that God continues to give us many great days ahead walking in His love, grace, and guidance.
With all my heart, aj
Sunday, February 10, 2008
Thanks to everyone for continuing to pray for Janna. The Lord is at work!!! Janna got a wonderful cardiology report on February 1st. What a birthday gift! And all praise to God for continuing to bless and keep her strong and healthy. It’s not a ‘usual’ thing, but Janna’s valve leakage has improved and we know that God doesn’t work in a ‘usual’ way! Dr. Milazzo is now calling her leakage ‘moderate’ rather than ‘moderate to severe’ as it was in all of 2007. The latest echo results will still be sent to a new surgeon in Charlotte and to her current surgeon and they, together, will decide whether Janna’s valve needs to be replaced now or not. Janna’s cardiologist indicated to us that more than likely they will not do surgery now but will continue to let her grow since she’s doing such a good job of that. She now weighs 30 pounds and is 35 inches tall. And we finally heard these words from her cardiologist, ‘See ya in 6 months!’
Janna started Pre-K at Edgewood Community Development School last week and loves it! She has some wonderful teachers and makes #7 in her class of 4 boys and 3 girls. At first she had a hard time staying in her chair during group times but she is getting the hang of it. Janna now receives Physical Therapy twice a week, and Occupational Therapy and Speech once a week during school hours. We are so blessed to have this public developmental school in Wayne County! There are only 31 schools like this in the state. We sure miss Ms. Michelle at Kommunikate Plus very much, and Ms. Barbara and Ms. Sonya too! We WILL be back by to visit ya'll soon.
Edgewood has high expectations of Janna just as we do. No sippy cups allowed! So Janna is quickly learning how to drink from an open top cup without drowning herself. And we got a note on her second day of school that said she had pee-peed a lot in the potty at snack time. We cannot say enough good things about her school!
Joe has a Wake Med appointment this week where we will be scheduling surgery for his defibrillator to be replaced along with one of the wires that goes into his heart. We’re anticipating this to be within a month or two and will keep you updated. His battery is functioning at about one quarter power so the time is here to take care of it.
Finally talked Joe into having a ‘real’ birthday party for Janna this year – she deserved it and had such a good time. See pictures below. Happy 3rd Birthday Baby Girl – mama and daddy love you VERY much and we’re so proud of you! And we thank the Lord for allowing us to be your parents and especially for working miracles in your life every day. Keep smiling!
Janna’s 3rd Birthday Party
Excited about her cousins being there!
Hugs for another cousin.
I couldn’t get her to stay still long enough to take a good picture!
This chair slowed her down for a little while and she actually blew her candle out this year!
Her Horsie wiped out!
Riding a Bull.
My talented cousin, April, helped me do (or rather did) this cake – and no, she didn’t have a horse-shaped cake pan.
First day of School!
Heading out to see the goats rather than getting in the car.
Silly grin!
And a silly Girl!
So, this is school?!!
I think she likes it!
Making herself right at home…
Destroying the soft-play area.
Various others…
Enjoying some pizza.
Caught up in a video.
Clapping for herself as she dances with a video.
Trying to break her neck at Christmas!
Ya think she rested long?
Not hardly!
Excited about being outside!
Feeding leaves to Max.
And giving him kisses!
She still loves her Christmas goats!
And sometimes, she actually gets still…
December 31st, 2007
Meet Macie and Gracie! Yes, Janna got goats for Christmas – well, Joe had been wanting and planning on goats since earlier in the year and it just so happened that we found these two and they were weaned recently so we got them the Friday before Christmas.
Macie is the biggest one (black) and Gracie is the smaller one (white). Many of you know that Janna’s great grandma was named Macie and she has her name as a middle name. Well, Macie also had a twin sister, Gracie, who just a few months back went home to be with her Lord and now Grandma and Aunt Gracie are once again reunited and I’m sure enjoying one another again. I hope they’re not offended that we named goats after them – I think it would make them smile.
With their collars on…
And finally their bells – we didn’t want to scare them right away with bells around their necks. 
Janna has been a bit leary of them because of their crying – they ‘baaah’ when they hear anyone coming near and the loudness scares Janna. But once they calm down she really enjoys talking to them and feeding them leaves.
The girl LOVES leaves!
Being silly at Grandma & Grandpa’s during Christmas.
And having some fun with her kitty during the Christmas Holiday.
Janna trying to run out of a picture with Aunt Liz. Joe’s sister, Elizabeth, was home from CO for Christmas – we miss you Aunt Liz!!! Was so good to see you!
December 18th, 2007
I never have enough time to keep up with this journal! Just wanted to add a quick update and remind everyone that if it wasn’t for the birth of Jesus, we would not be having Christmas! He IS the reason so let’s remember to keep our focus on the reason this season.
Janna will be getting 2 little surprises VERY soon and I think Joe is more excited than she will be – LOL. I’ll post pictures as soon as her surprises arrive. They were suppose to be ready the second week of December but some times we have to be patient. I’ll give you a little hint – they will both wear bells around their necks and they’re Janna size – that’s all you get. Pictures will be added soon after they arrive.
We hope that you and your family have a very Merry Christmas and enjoy spending time together. I’ll leave you with my attempt of getting a Christmas photo of Janna. God bless and keep you, aj
Trying to get a Christmas picture of Janna…
Janna, could you smile in this direction please?
Yes, and I’ll pick this flower off of my dress in the meantime.
You’re being way too silly mama!
Ok, how about this for a pose?
Now Janna’s being silly!
Way too silly!
Okay, how about like this mama?
Not bad…
Picking more flowers…
Yes! I’m free!
And making tracks…
Are we about done yet!?
Give me just a minute mama?!
I’ve got 2 big grins left and here they are…slobber and all - LOL!
Please tell me that this is the last one!
Thursday, October 11, 2007
First I want to remind everyone that Janna will be walking in her 2nd Buddy Walk in Raleigh on Sunday, October 21st. If you are interested in sponsoring her or even coming to walk along, please click on her ‘Sponsor Me’ badge above. It’s really a fun event and only costs $10 [or $15 if you register after Oct. 13] (adult)/$5 [no matter when you register] (child) which includes your meal, a Buddy Walk T-shirt, and snacks during the day. There are lots of fun activities for kids and Chris Burke (Corky from the TV Series ‘Life Goes On’) and his band will be there again this year. Linda Loveland from WRAL 5 will also be the emcee again this year. Contact me if you are interested in registering or for directions to Anderson Point Park. You can also register on that day when you arrive. And remember, you can donate to Janna’s fundraising page through December of this year. Thanks for your support and most importantly for your thoughts and prayers for Janna and us over the last 2, almost 3, years now. The Lord continues to bless her with much health, energy, and smiles which brings us so much joy along this journey.
Now, to update you on Janna; We can hardly keep up with her! She has lots of energy and is busy, busy all of the time, except when she’s sleeping of course. She’s still quite attached to Duckie and has a tight grip on him at nap and night time. She still requires a good bit of sleep which provides her with much energy when she’s awake. Back in August she battled the croup for a week but other than that she remains quite healthy.
She’s doing well at Speech Therapy each week and surprises Mrs. Michelle and Grandma quite often with a blurt out such as ‘The End’ (at the end of a book) or ‘Who is it?’ when they’re pretend playing on the telephone. She has many words (not that you would understand all of them) and I’m constantly listening intently to try and decipher what she is referring to, trying to tell us, etc. Her sign language is blooming too. It amazes us at how quickly she will add a new sign and use it, especially if she wants something. Joe said recently that she has many more signs than him. Janna really loves saying and signing her animals. ‘Hess’ is horse, ‘gog’ is dog, ‘kih kat’ is still kitty cat, pig is ‘ih’ with the sign and she loves chickens and loves to sign and say it – ‘gih ken’. Uncle Andy and family have chickens and she enjoyed seeing them recently at the Wayne Co. Fair, until the roosters crowed out – LOL. Their loud sounds troubled Janna so our time looking at the chickens and rabbits got cut short. She absolutely loved the pigs and the sheep, until they bahhed out at her. She still hung around but wasn’t as sure about them. She also enjoyed her first hobby horse ride, twice, that day as she grinned and said ‘weeee’ the whole time.
This was not the best Summer for pets at our house. Jack escaped a few times and got his hind-quarters wounded pretty badly and his eye scratched another time by who knows what. Joe did all he could to keep him in the fence but he insisted on being a young Lab and venturing out. His last escape has left him missing and since it’s been months, we’re sure he is not coming back. As you know Janna absolutely loved Jack and said his name about as clear as any word she has. He always made her giggle. She still likes looking at pictures of him on the computer. Jack has been replaced with a wonderful older Lab named Tyler. Tyler is 7 years old and much more mellow than Jack, except when it comes to a ball. He will chase a ball until he starts limping. His goal is to fetch and catch and he will go all day if you can. He catches line drives, one hoppers, you name it. He strives with all he has to get the ball and faithfully bring it back for more. His family could no longer keep him because they moved and did not have time or space for him to run. He grew up with 2 little girls so he is smart with Janna. And finally he’s starting to take more time and interest in her like Jack did. As for Miss Kitty; she became a very young mama to our surprise at just around 6 months old. She had her 3 little kittens and did well by them. You’ll see pictures below. But on September 11th as I was leaving for work I spotted a black ‘something or other’ near the end of the driveway. It was Miss Kitty clinging to a tree limb and not responding when I called her name. Her kittens were nearing 5 weeks old and she was gone. We really think that she fell from or with a high oak limb. It was really windy that night/am and Joe did not find any marks as if she’d been hit by a car. She had never gone to the road before but she did love to fly up a tree no matter its’ size. We can only assume she fell to the hard packed driveway as she clung to the limb she was still holding to. She was a good 6-8 feet from the road. We were able to get the kittens to drinking milk and soon enough food. They are all doing well and one has already found a home with Miss Kelsey Tart. We will definitely keep one and probably the other one too, unless you want to come get him???? Janna has been a little rough with them but she is learning that they too, like Miss Kitty, do not like to be picked up by the tail!
As most of you know, Janna got an excellent report in August at her cardiology appointment and the Jan/Feb ‘08 surgery is postponed indefinitely. She visits Dr. Milazzo again on November 2nd so please be praying that she will get another good report then from the echo. We appreciate your thoughts and prayers for our girl!
I’ll hush and let you see some pictures.
Joe was able to get some great pictures this Summer of some Monarch Butterflys.
Janna sleeping with a tight grip on her Duckie.
A few of the many silly faces of Janna;
Mama Kitty
Mitch and Max wanting to see the new kittens
Nosey Max
Some of the last picture of Miss Kitty playing along side of Janna
Yes she’s licking the sand bucket much to mama’s dismay!
Janna and her ‘Hess’ Max
Enjoying a piece of a corn stalk
Here mama, you can have it.
Janna and her new dog, Tyler.
Come on boy!
Tyler – you know mama said we can’t go to the road!
Let’s push this around.
Yes, she can ride fairly well…
But she much rather do this. (It IS better exercise at least)
…we all fall down!
Just strolling around.
Joe can’t wait until Janna’s old enough to help ‘rustle up some fun’ with the ponies.
Loving this journey…
Friday, August 3, 2007
Janna will be WALKING in the 2007 Buddy Walk in Raleigh again this year. Please click on ‘SPONSOR ME’ in the Badge above to visit her page and/or to donate. Thanks a lot!!!
I’m very thankful and thrilled to be updating you on Joe and Janna’s latest cardio appointments. Prayers are being answered!!! In July we learned that Joe’s defibrillator is holding the same voltage as it was back in March. Dr. Campbell said, ‘Let’s not cut you open until we have to’, and we gladly agreed! We see him again in January. He thought surely that the battery voltage would have started going down by now since it was placed in Joe’s chest in September of 2003. The computer shows that its’ function is fine and Joe has only had one minor incident where his heart raced for 43 seconds back in March. So it looks like we escape surgery for 2007, Lord willing. We had a record going; consistent heart related surgeries each year for 03-06.
And to top things off, Janna got an excellent report today at her appointment. Nothing about the leak has changed, BUT the dilated heart that was seen back in May is no longer dilated (enlarged) PRAISE THE LORD!!! The echo does show that her valve needs some attention but with the rest of her heart looking so well and she not showing any signs of heart failure, Dr. Milazzo said ‘We’re going to treat the patient, not the echo.’ He also commented that since she is doing so well, that the benefits of replacing this valve right now do not outweigh the risks of Open Heart Surgery. Upon initial examination he said he could NOT feel her liver and Joe knew that was a good sign! The increased Lasix (the very med that I dislike giving her) is doing its job and keeping the fluid caused by the leak from backing up into her heart, liver, lungs. The Lord is truly at work keeping her body from any harm from this valve leakage. She is tolerating it so well that Dr. M said surely the Jan/Feb surgery would be postponed. She will more than likely start school on time (Feb.) with no surgery interfering. When she returns for another echo in November, he hopes to increase the Lasix yet again, provided she has gained some weight. He could not increase it today. She is hovering around 27lbs - kind of at a stand still, but getting taller, so she is growing. This valve is something that he will keep a close eye on. It opens up very wide and as long as it does this and doesn’t show any narrowing, he will continue to watch her and let her grow and strive to get her bigger and buy time in hopes that she can receive a tissue valve rather than a mechanical one. Avoiding life-time blood thinners that go along with a mechanical valve would be a wonderful blessing. So we continue praying, asking God to protect Janna and heal her heart and keep her safe. Although Janna did a lot of screaming at the appointment, it was a wonderful outcome. She actually did well for Dr. M to listen to her heart and for the echo. But those mean nurses that have to weigh her, attempt to get her blood pressure (never happens!), check her heart rate, and oxygen saturation - they get to see rage quickly followed by good-bye kisses as soon as they step back. Janna really loves them from a distance but as soon as she sees their equipment, it’s on! We can’t wait for her to grow out of this fearful stage.
Janna had a wonderful time at Bible School back in June! Our pastor dressed as a Penguin (JP) each night and here’s some pictures to show you how things went. Janna absolutely loved JP and got a little excited each time she saw him. JP (stands for Just Plunge/Dive into Jesus) started the week out with seaweed all over him but each night as he learned about God’s Word he got cleaned up and was all clean by the last night of learning and fun. This particular picture shows Pastor Jim with his beak upside down - it was hard work getting in and out of his costume each night being JP and the preacher.
I told you Janna gotta little excited when she’d see JP!
She’s really been enjoying her Summer as well, the swing and the water and the animals, of course.
Playing ball back in June.
Signing ‘MORE’ although she’s about to freeze - it was a little overcast and breezy this afternoon.
Thanks Daddy!
Wipe Out!
I know you’re back there Miss Kitty...
There you are!
I know I can get a pound of dirt in this diaper before mama sees me.
Come on in Kitty, it’s not that cold!
Really, it’s okay.
Well, okay, I’m going to play without you.
It sure is fun Kitty!
Come on, you’ll love it!
Cause playing with drop cords (unplugged ones) is FUN!
Janna and her buddy, Miss Kitty.
I see - you like to play when there’s no water in here!
Hold still Janna, I’m gonna comb your hair...
Yeah right - she MIGHT be still when she’s 8!
Janna and Max.
Mitch getting his hooves cleaned out.
Will you open this for me mama?
YAY, she’s gonna open it!
Stick ‘em up!
Janna and Miss Kitty.
Good kisses!
Air hoses are fun too!
Just a little tired...
Janna and Duckie! Every time they increase Janna’s medicines, she takes little quick rests throughout the day with Duckie, other than her regular nap. In a few days, she’s wide open again.
Our driveway Angel!
Friday, August 3, 2007
I'm very thankful and thrilled to be updating you on Joe and Janna's latest cardio appointments. Prayers are being answered!!! In July we learned that Joe's defibrillator is holding the same voltage as it was back in March. Dr. Campbell said, 'Let's not cut you open until we have to', and we gladly agreed! We see him again in January. He thought surely that the battery voltage would have started going down by now since it was placed in Joe's chest in September of 2003. The computer shows that its' function is fine and Joe has only had one minor incident where his heart raced for 43 seconds back in March. So it looks like we escape surgery for 2007, Lord willing. We had a record going; consistent heart related surgeries each year for 03-06.
And to top things off, Janna got an excellent report today at her appointment. Nothing about the leak has changed, BUT the dilated heart that was seen back in May is no longer dilated (enlarged) PRAISE THE LORD!!! The echo does show that her valve needs some attention but with the rest of her heart looking so well and she not showing any signs of heart failure, Dr. Milazzo said 'We're going to treat the patient, not the echo.' He also commented that since she is doing so well, that the benefits of replacing this valve right now do not outweigh the risks of Open Heart Surgery. Upon initial examination he said he could NOT feel her liver and Joe knew that was a good sign! The increased Lasix (the very med that I dislike giving her) is doing its job and keeping the fluid caused by the leak from backing up into her heart, liver, lungs. The Lord is truly at work keeping her body from any harm from this valve leakage. She is tolerating it so well that Dr. M said surely the Jan/Feb surgery would be postponed. She will more than likely start school on time (Feb.) with no surgery interfering. When she returns for another echo in November, he hopes to increase the Lasix yet again, provided she has gained some weight. He could not increase it today. She is hovering around 27lbs - kind of at a stand still, but getting taller, so she is growing. This valve is something that he will keep a close eye on. It opens up very wide and as long as it does this and doesn't show any narrowing, he will continue to watch her and let her grow and strive to get her bigger and buy time in hopes that she can receive a tissue valve rather than a mechanical one. Avoiding life-time blood thinners that go along with a mechanical valve would be a wonderful blessing. So we continue praying, asking God to protect Janna and heal her heart and keep her safe. Although Janna did a lot of screaming at the appointment, it was a wonderful outcome. She actually did well for Dr. M to listen to her heart and for the echo. But those mean nurses that have to weigh her, attempt to get her blood pressure (never happens!), check her heart rate, and oxygen saturation - they get to see rage quickly followed by good-bye kisses as soon as they step back. Janna really loves them from a distance but as soon as she sees their equipment, it's on! We can't wait for her to grow out of this fearful stage.
Janna had a wonderful time at Bible School back in June! Our pastor dressed as a Penguin (JP) each night and here are some pictures to show you how things went. Janna absolutely loved JP and got a little excited each time she saw him. JP (stands for Just Plunge/Dive into Jesus) started the week out with seaweed all over him but each night as he learned about God's Word he got cleaned up and was all clean by the last night of learning and fun. This particular picture shows Pastor Jim with his beak upside down - it was hard work getting in and out of his costume each night being JP and the preacher.
I told you Janna gotta little excited when she'd see JP!
She's really been enjoying her Summer as well, & the swing & the water & the animals, of course.
Playing ball back in June.
Signing 'MORE' although she's about to freeze - it was a little overcast and breezy this afternoon.
Thanks Daddy!
Wipe Out!
I know you're back there Miss Kitty...
There you are!
I know I can get a pound of dirt in this diaper before mama sees me.
Come on in Kitty, it's not that cold!
Really, it's okay.
Well, okay, I'm going to play without you.
It sure is fun Kitty!
Come on, you'll love it!
Cause playing with drop cords (unplugged ones) is FUN!
Janna and her buddy, Miss Kitty.
I see - you like to play when there's no water in here!
Hold still Janna, I'm gonna comb your hair...
Yeah right - she MIGHT be still when she's 8!
Janna and Max.
Mitch getting his hooves cleaned out.
Will you open this for me mama?
YAY, she's gonna open it!
Stick 'em up!
Janna and Miss Kitty.
Good kisses!
Air hoses are fun too!
Just a little tired...
Janna and Duckie! Every time they increase Janna's medicines, she takes little quick rests throughout the day with Duckie, other than her regular nap. In a few days, she's wide open again.
Our driveway Angel!
Thursday, May 31, 2007
WE HOPE YOU HAD A VERY BLESSED MEMORIAL DAY WEEKEND!!!
Well, I’ve been putting this journal entry off long enough. I haven’t really wanted to type out our latest cardiology news from May 18th. But we know God is able and willing and we are continuing to ask believing, knowing that He will heal Janna’s leaky valve and/or provide that healing miracle through the hands of her surgeon once again. Please pray with us on Janna’s behalf. We truly appreciate your prayers!
After doing an echo on Janna’s heart, Dr. Milazzo told us that we're now striving to get her to her 3rd birthday (Feb.) before another heart surgery - to replace the leaky Mitral Valve. We were definitely shocked at first but the more I thought about it, I remembered that, indeed, Dr. M said last year that this last repair would probably last 2-3 years. And though it doesn’t seem like 2 years have gone by, February will be 2 years since the last surgery. Dr. Jaggers (surgeon) told us 3-4 years, but of course no one can predict exactly when another heart surgery is necessary – that’s why they do echoes and caths. We just weren’t expecting it this soon! Dr. M also said that he’d seen it go both ways - her Mitral Valve leak could possibly get better, but more than likely, worse. It's leaking considerably although she's still tolerating it well and working over the leak with meds (he increased those too). I really dislike giving my baby girl alcohol (Lasix) on a daily basis. But, she is constantly on the go or fast asleep. She is growing so well - closing in on 27 lbs. although she still has some picky eating habits. So, once again, she's not showing us on the outside how her little heart is doing on the inside. God is truly blessing her with great strength and health despite her heart issues – Praise His name!
God has provided 2 total strangers to us for the last 2 weeks who are taking Janna’s name back to their church congregations so that they can also pray for her heart issues. I won’t write in detail about these now but will have to soon tell you an awesome story about a guy named Timmy, and his church, who are praying for Janna.
We're praying and asking for anyone who can and will, please help us pray that Janna's leak DOES get better so she can avoid this surgery and grow as long as possible.
Our current options;
A second valve repair, which he said was highly unlikely.
A mechanical valve, which would need replacing again in the future (5-10 years) once she outgrows it and needs a larger one. This valve would require Janna to be on Coumadin for life.
Tissue valve technology is booming right now, so, if we hold her out long enough we may can avoid the mechanical valve. There's NOT a lot of info out there yet about how long this type valve will last, etc.
Oh, and now there is a new, great surgeon in Charlotte, NC and Dr. M says he will send all of Janna’s echoes and such to him just to get another good opinion when the time comes for surgery – just to make sure they are making the best decisions for her heart.
Janna’s next cardiology appointment is August 3rd.
We have our first transition meeting tomorrow, June 1st to discuss school! Yes, Lord willing, Janna will start at Edgewood (a Developmental School in Goldsboro) on her birthday next year. She will attend the Pre-school for ages 3-5 to help prepare her for ‘real’ school.
Janna is really enjoying staying with Grandma. My mama retired the last day of April and started her ‘new’ job of caring for Janna the next day – she didn’t even want a week off! They are having fun jumping on the trampoline, riding the golf cart, and planting flowers. Even Grandpa is getting a hand in at feeding ‘picky’ Janna! MeMa & PaPa still come on Mondays and take Janna to Speech where she is starting to really blossom with new words and signs. Her latest strong word is ‘Duck’ and she loves saying ‘Outside’ – she’s strong with the ‘Out’ and kinda whispers ‘side’ and drags it out like a true southerner – LOL.
Also, to update you on Joe; he needs his defibrillator replaced in the next few months - he has one of those Guidant brands that are faulty (they were able to reprogram it last year). We will find out more about this at a June 20th/Wake Med appointment. The surgery will probably happen this Fall.
I will move on to brighter things – LOTS of pictures of Janna enjoying life!
Janna decided to take a nose dive in the bath tub and bruised her eye on the drain back in April – she was fine in 30 seconds, unlike me – LOL.
Enjoying the paper at Dr. Milazzo’s on May 18th. That’s ALL that she enjoyed! Janna did a lot of screaming and crying when they did anything to her and when they backed off, she would wave bye-bye and blow kisses as if to say – ‘Okay, you can leave now!’
Various ‘Out’ – ‘siiiiiide’ pictures from April and May 2007.
What does the Hoot Owl say, Janna? Joe asks her this EVERY am when he gets up – LOL. 
Kitty loves her although Janna’s mission is to pick Kitty up by the tail constantly!
Playing in Pony water – Yuk!
‘Look, mama – Kitty is trying to get my shoe!’
‘Stop that’, Kitty!
‘Uhh, I think he scratched it!’
Oh well…
Kitty does as she pleases, even around the ponies.
Look closely – don’t miss Kitty in the hay trough!
Janna telling her ponies all about something or other.
Looking for snakes – just kidding MeMa!
But we did find one in the backyard recently! Ever seen one all wrinkled up like this!!??
Janna & Duckie!!!
A stick for Jack!
Sweet girl.
You’re so silly Mama!
Playing Basketball with Daddy.
Here ya go Daddy.
Signing and saying ‘Kitty Cat’.
Being Silly!
Janna’s daily mission.
Gimme FIVE Kitty!
Come over here, Max!
Kitty wants to play Bubbles too!
More Basketball with Daddy.
Daddy won’t pass the ball to me, Mama.
Playing fetch with Daddy and Jack.
Jack slimed her when he returned from the ditch – YUK!
The Mission continues…
Our sweet girl!
She likes backing up to the fence so Jack can lick her from behind.
More Mission…
And Kitty keeps coming back for more?!
Just day dreaming…
Who me!? No way – I’m not eating dirt, Mama!
Kitty learns to read – LOL!
Look closely for Kitty – she’s climbing on the old pole.
Let’s see, I’ve gotta get around here so I can see what this sign says.
Here I go…
Almost there…
I can’t quite see it…
Ah hah,– Lab-ra-dor Crossing…. 
YIKES – I’m outta here – look closely to see Kitty’s feet departing.
More Mission…
Petting Mitch – he’s such a good boy!
Umh, Umm – good loves Mitchy Boy!
Daddy walking Mitch – he’s lost a lot of his fat roll from last year – Mitch that is – LOL!
Janna signing ‘MORE’!
Happy Girl!
Janna signing HORSE – her version anyway.
Kitty hiding from the ‘tail snatcher’ who’s swinging below.
Janna at the West Reunion, May 20th – wondering why everybody gets to play ball but her??!!
Cousins Caroline and Rebecca in the background.
And finally, just lying around on her bunny watching a video – after destroying the den!
You taking my picture Mama?!
I’m really kinda busy…
Okay, I’ll smile a little for ya.
Saturday, March 31, 2007
It has been too long! And daddy shipped Janna to Fayetteville with MeMa & PaPa this weekend because it was his birthday, so I actually have a chance to update her page- LOL! Janna is doing really well; growing, loving the outdoors, and enjoying all of her critters. Daddy brought her home a new kitty cat recently in place of Sox. We’re afraid Sox is gone for good. Her new kitty, so far, is known as ‘Kitty’ - LOL. He was a little afraid of Janna at first but now he likes to play with her, most of the time.
Janna has 2 new teeth that have almost fully come in. So we’re up to 12 toofers (that we know about). She’s also dealt with some reflux issues again recently but that has calmed down of late. And we’ve finally made the transition to ‘real’ milk and even a sippy cup. We’re using “Thick-It”, a powder to thicken liquids so that Janna doesn’t strangle easily. You may recall her swallow study from last Summer in which they determined she needed thin liquids thickened in order not to aspirate. So far, Janna doesn’t seem to notice that the thickener is in her milk or water so that is going well. She’s yet to like juice or anything other than milk and a little water. And boy has she become a picky eater! But we are thankful that she does eat some healthy foods. Her favorite still of course is YOGURT! She loves crispy turkey bacon and apples and finally will eat bananas some too. Sometimes it seems that she lives off of cereal and saltine crackers and she signs both or one or the other at every meal - LOL. She loves most anything Italian but some days she won’t touch that. It’s definitely a learning process for us.
We recently took Janna on her first camping trip. She really liked it! It was a one night trial thing but we think she’s going to be a good camper. It took her a little longer to get to sleep being in a different place but duckie was with her and she slept like a log once she went out, unlike mama and daddy - LOL.
Janna has one more Synagis shot coming up in April and that will be it - no more monthly Synagis’ forever! We’re are very thankful that she qualified for this shot to ward off the RSV Virus in babies and toddlers but are looking forward to shot-free winter months from now own. She’s scheduled for her next cardio appointment and echo in May. I will update you on that then. We’re praying for an uneventful appointment. Last visit showed that her heart was enlarged a little from the Mitral Valve Leak but we are trusting and asking God to keep her heart safe and healthy despite the leak.
We can’t thank God enough for blessing us with spunky Janna. She is a very healthy and happy little girl and continues to steal our hearts daily. Enjoy the pictures. God bless you all, AJ
The New Kitty
Janna trying to pet the new kitty the day we got him......
......and excited over the new kitty.
Yes, that’s Uncle Andy’s first skate board from the 80s behind ‘Kitty’.
Janna reaches her hands out and wiggles her fingers like she’s tickling the kitty - LOL.
Kitty is still a bit leary of Janna.
Janna a little excited to see her dog, Jack.
Our Happy Camper!
Helping daddy put the tent up......
......and nearly tearing it down! LOL 
Playing in the tent.
Playing with pine straw.
Wanting to throw her leaf on the fire.
Soaking herself with mama’s water bottle.
Not a Happy Camper - she couldn’t figure out how to cross over sleepy-headed daddy to get out of the tent. Plus Joe wanted me to add a picture of Janna NOT smiling - he feels that everyone is deceived and thinks this child is a perfect, happy smiling girl ALL of the time - LOL.
You need help breaking up camp daddy?
More outside and Kitty pictures......
Janna got overbalanced and fell over while playing with Kitty.
Jack wants to get out and play!
Going to see Jackie Boy...
...and trying to feed him grass!
HIGH FIVE KITTY! 
Trying to keep up with Jack up and down the fence line. 
Walking in clover.
Puuuurty Kitty!
Playing with the birds.
Most of you know that the Goldsboro News Argus came out and did a story on Janna and her ponies. These pictures were taken that day.
Mitch and Janna.
Max and Janna
About to ride Mitch.
Playing with ‘Kitty’.
Our little Farm Girl.
Max being silly!
Nap time - Janna sometimes likes to use Duckie to block the sunlight so she can sleep - LOL. 
Saturday, March 31, 2007
It has been too long! And daddy shipped Janna to Fayetteville with MeMa & PaPa this weekend because it was his birthday, so I actually have a chance to update her page- LOL! Janna is doing really well; growing, loving the outdoors, and enjoying all of her critters. Daddy brought her home a new kitty cat recently in place of Sox. We’re afraid Sox is gone for good. Her new kitty, so far, is known as ‘Kitty’ - LOL. He was a little afraid of Janna at first but now he likes to play with her, most of the time.
Janna has 2 new teeth that have almost fully come in. So we’re up to 12 toofers (that we know about). She’s also dealt with some reflux issues again recently but that has calmed down of late. And we’ve finally made the transition to ‘real’ milk and even a sippy cup. We’re using “Thick-It”, a powder to thicken liquids so that Janna doesn’t strangle easily. You may recall her swallow study from last Summer in which they determined she needed thin liquids thickened in order not to aspirate. So far, Janna doesn’t seem to notice that the thickener is in her milk or water so that is going well. She’s yet to like juice or anything other than milk and a little water. And boy has she become a picky eater! But we are thankful that she does eat some healthy foods. Her favorite still of course is YOGURT! She loves crispy turkey bacon and apples and finally will eat bananas some too. Sometimes it seems that she lives off of cereal and saltine crackers and she signs both or one or the other at every meal - LOL. She loves most anything Italian but some days she won’t touch that. It’s definitely a learning process for us.
We recently took Janna on her first camping trip. She really liked it! It was a one night trial thing but we think she’s going to be a good camper. It took her a little longer to get to sleep being in a different place but duckie was with her and she slept like a log once she went out, unlike mama and daddy - LOL.
Janna has one more Synagis shot coming up in April and that will be it - no more monthly Synagis’ forever! We’re are very thankful that she qualified for this shot to ward off the RSV Virus in babies and toddlers but are looking forward to shot-free winter months from now own. She’s scheduled for her next cardio appointment and echo in May. I will update you on that then. We’re praying for an uneventful appointment. Last visit showed that her heart was enlarged a little from the Mitral Valve Leak but we are trusting and asking God to keep her heart safe and healthy despite the leak.
We can’t thank God enough for blessing us with spunky Janna. She is a very healthy and happy little girl and continues to steal our hearts daily. Enjoy the pictures. God bless you all, AJ
The New Kitty
Janna trying to pet the new kitty the day we got him......
......and excited over the new kitty.
Yes, that’s Uncle Andy’s first skate board from the 80s behind ‘Kitty’.
Janna reaches her hands out and wiggles her fingers like she’s tickling the kitty - LOL.
Kitty is still a bit leary of Janna.
Janna a little excited to see her dog, Jack.
Our Happy Camper!
Helping daddy put the tent up......
......and nearly tearing it down! LOL
Playing in the tent.
Playing with pine straw.
Wanting to throw her leaf on the fire.
Soaking herself with mama’s water bottle.
Not a Happy Camper - she couldn’t figure out how to cross over sleepy-headed daddy to get out of the tent. Plus Joe wanted me to add a picture of Janna NOT smiling - he feels that everyone is deceived and thinks this child is a perfect, happy smiling girl ALL of the time - LOL.
You need help breaking up camp daddy?
More outside and Kitty pictures......
Janna got overbalanced and fell over while playing with Kitty.
Jack wants to get out and play!
Going to see Jackie Boy...
...and trying to feed him grass!
HIGH FIVE KITTY!
Trying to keep up with Jack up and down the fence line.
Walking in clover.
Puuuurty Kitty!
Playing with the birds.
Most of you know that the Goldsboro News Argus came out and did a story on Janna and her ponies. These pictures were taken that day.
Mitch and Janna.
Max and Janna
About to ride Mitch.
Playing with ‘Kitty’.
Our little Farm Girl.
Max being silly!
Nap time - Janna sometimes likes to use Duckie to block the sunlight so she can sleep - LOL.
Sunday, February 11, 2007
February 2, 2007
HAPPY 2nd BIRTHDAY JANNA MACIE!!!
Mama and Daddy love you VERY MUCH!
We cannot even believe that our baby girl is 2 today. She’s our Ground Hog baby and she loves playing with her shadow. Lord willing, we’re guaranteed another year of smiles, health, and happiness with the good girl.
Janna had her routine well-baby check-up yesterday with Dr. Tayloe. She weighs 25lb. and 4 oz., is 32 inches tall, and her head is GROWING – finally, another few centimeters – 45cm round. Boy did she get mad about the finger prick – I think she despised the band-aid wrapped around her finger worse than the prick. Once she got it off she calmed down. Once again, her hemoglobin is low – we got a 9.9 yesterday. I think we’re just going to have to accept that Janna has low hemoglobin and leave it at that. She’s healthy, she’s growing, she’s active and we give her more iron than necessary. She’s just gonna be low and no one knows why. Although we’re testing for Celiac’s Disease next Friday at the Cardiologist, Dr. Tayloe is nearly 100 percent sure that she doesn’t have this. He doesn’t think she’d be thriving so well if she had CD. Janna showed off for the office staff as Aunt Gay brought her in the office area for check-out. She twirled round and round as she loves to do and did a little dance, gave big smiles and did a little sign language too. She even signed and said ‘Kit Cat’ for Dr. Tayloe as there was a big picture of a puppy and cat on the wall in her patient room. We still have not seen any more of Sox (the kitty that came before Christmas). Janna still signs and looks for the kitty occasionally. Maybe Sox will show back up one day.
I’ll try to update Janna’s page again soon with information from her February 9th Cardiology appointment and pictures.
May God bless you all, AJ
February 11, 2007
We had a trying visit at the cardiologist this past Friday. Janna is fearful every time now, so even weight, height, and head measurements are torture for her. She is never calm enough for a blood pressure reading. We did get her calm enough for Dr. Milazzo to take a listen to her heart and she did fine for the echo as she usually does. They pop a video in the overhead TV and dim the lights and she lets them take pictures of her heart easily, except she tries to help and also likes eating the gel they spread over her chest while the probe takes pictures. They saved the best for last! Once again, we wrapped Janna in a sheet so she couldn't move – she loved that, NOT! Even daddy helped hold her still this time for the blood draw. And again, Mrs. Ann (we love Mrs. Ann) got Janna on the first stick! They are testing for Celiac's Disease (mentioned in a recent journal) and also checking her thyroid and platelets. They are aware that her hemoglobin was low again at the Peds last week. We should hear something this week from the results. Janna was pitiful Friday afternoon. Her arm was really hurting her. I think they may have wrapped it too tight while drawing blood as she's never shown signs before of her arm hurting after a blood draw. She really favored that arm, would look at it/point to it, and just cry if she tried to move it or use it. Some tylenol helped ease it off and she was using it again in no time.
As for the echo, it proved to be about the same as last visit, except that Janna’s heart is dilated. This enlargement is due to the Mitral Valve leak. The Tricuspid side of the valve isn’t leaking much at all, but the Mitral Valve is leaking a fair amount. But the good news is; Janna is working over this leak. The pressures in the right side of her heart are good which shows that this leak is NOT affecting her lungs. So we keep praying that she will be able to tolerate and even out do this leak for many years. We know God has been and will continue to keep our baby girl safe despite this leak. The best news of the day – we got a ticket to come back in 3 months! This is the longest stretch we’ve had to avoid a cardiology visit. We love Dr. Milazzo and his nurses, especially Mrs. Cathy and Mrs. Ann, but we’re glad we don’t have to visit them until May.
Well, I can't take credit for the pictures you're seeing. They were taken by a co-worker of mine, Tom Rains, the day after Janna's birthday. We didn't know how Janna would do since she's become so mobile and Joe really didn't think Tom would be able to get any good pictures. He thought we were wasting our time driving to Garner since Janna is so active now. But as you can see, Tom did a wonderful job of capturing some great treasures of Janna even though she was on the go most of the session. We won't be going to Sears any more as they always rush us! Please visit Tom's photography site at Tom's Site to see more of his great work. Or, if this doesn't work for you, just type in www.thomasrainsphotography.com
Our TWO year old Valentine Girl;
This was a dress of my grand-daddy's, who was born in 1918. I'll post a
better one eventually so you can see the whole dress.
And we had to bring along 'Duckie' - Janna's security for professional picture taking and nite-nite time.
Sunday, February 11, 2007
February 2, 2007
HAPPY 2nd BIRTHDAY JANNA MACIE!!!
Mama and Daddy love you VERY MUCH!
We cannot even believe that our baby girl is 2 today. She’s our Ground Hog baby and she loves playing with her shadow. Lord willing, we’re guaranteed another year of smiles, health, and happiness with the good girl.
Janna had her routine well-baby check-up yesterday with Dr. Tayloe. She weighs 25lb. and 4 oz., is 32 inches tall, and her head is GROWING – finally, another few centimeters – 45cm round. Boy did she get mad about the finger prick – I think she despised the band-aid wrapped around her finger worse than the prick. Once she got it off she calmed down. Once again, her hemoglobin is low – we got a 9.9 yesterday. I think we’re just going to have to accept that Janna has low hemoglobin and leave it at that. She’s healthy, she’s growing, she’s active and we give her more iron than necessary. She’s just gonna be low and no one knows why. Although we’re testing for Celiac’s Disease next Friday at the Cardiologist, Dr. Tayloe is nearly 100 percent sure that she doesn’t have this. He doesn’t think she’d be thriving so well if she had CD. Janna showed off for the office staff as Aunt Gay brought her in the office area for check-out. She twirled round and round as she loves to do and did a little dance, gave big smiles and did a little sign language too. She even signed and said ‘Kit Cat’ for Dr. Tayloe as there was a big picture of a puppy and cat on the wall in her patient room. We still have not seen any more of Sox (the kitty that came before Christmas). Janna still signs and looks for the kitty occasionally. Maybe Sox will show back up one day.
I’ll try to update Janna’s page again soon with information from her February 9th Cardiology appointment and pictures.
May God bless you all, AJ
February 11, 2007
We had a trying visit at the cardiologist this past Friday. Janna is fearful every time now, so even weight, height, and head measurements are torture for her. She is never calm enough for a blood pressure reading. We did get her calm enough for Dr. Milazzo to take a listen to her heart and she did fine for the echo as she usually does. They pop a video in the overhead TV and dim the lights and she lets them take pictures of her heart easily, except she tries to help and also likes eating the gel they spread over her chest while the probe takes pictures. They saved the best for last! Once again, we wrapped Janna in a sheet so she couldn't move - she loved that, NOT! Even daddy helped hold her still this time for the blood draw. And again, Mrs. Ann (we love Mrs. Ann) got Janna on the first stick! They are testing for Celiac's Disease (mentioned in a recent journal) and also checking her thyroid and platelets. They are aware that her hemaglobin was low again at the Peds last week. We should hear something this week from the results. Janna was pitiful Friday afternoon. Her arm was really hurting her. I think they may have wrapped it too tight while drawing blood as she's never shown signs before of her arm hurting after a blood draw. She really favored that arm, would look at it/point to it, and just cry if she tried to move it or use it. Some tylenol helped ease it off and she was using it again in no time.
As for the echo, it proved to be about the same as last visit, except that Janna’s heart is dilated. This enlargement is due to the Mitral Valve leak. The Tricuspid side of the valve isn’t leaking much at all, but the Mitral Valve is leaking a fair amount. But the good news is; Janna is working over this leak. The pressures in the right side of her heart are good which shows that this leak is NOT affecting her lungs. So we keep praying that she will be able to tolerate and even out do this leak for many years. We know God has been and will continue to keep our baby girl safe despite this leak. The best news of the day – we got a ticket to come back in 3 months! This is the longest stretch we’ve had to avoid a cardiology visit. We love Dr. Milazzo and his nurses, especially Mrs. Cathy and Mrs. Ann, but we’re glad we don’t have to visit them again until May.
Well, I can't take credit for the pictures you're seeing. They were taken by a co-worker of mine, Tom Rains, the day after Janna's birthday. We didn't know how Janna would do since she's become so mobile and Joe really didn't think Tom would be able to get any good pictures. He thought we were wasting our time driving to Garner since Janna is so active now. But as you can see, Tom did a wonderful job of capturing some great treasures of Janna even though she was on the go most of the session. We won't be going to Sears any more as they always rush us! Please visit Tom's photography site at Tom's Site to see more of his great work. Or, if this doesn't work for you, just type in www.thomasrainsphotography.com
Our TWO year old Valentine Girl;
This was a dress of my grand-daddy's, who was born in 1918. I'll post a better one eventually so you can see the whole dress. And we had to bring along 'Duckie' - Janna's security for professional picture taking and nite-nite time.
Sunday, February 11, 2007
February 2, 2007
HAPPY 2nd BIRTHDAY JANNA MACIE!!!
Mama and Daddy love you VERY MUCH!
We cannot even believe that our baby girl is 2 today. She’s our Ground Hog baby and she loves playing with her shadow. Lord willing, we’re guaranteed another year of smiles, health, and happiness with the good girl.
Janna had her routine well-baby check-up yesterday with Dr. Tayloe. She weighs 25lb. and 4 oz., is 32 inches tall, and her head is GROWING – finally, another few centimeters – 45cm round. Boy did she get mad about the finger prick – I think she despised the band-aid wrapped around her finger worse than the prick. Once she got it off she calmed down. Once again, her hemoglobin is low – we got a 9.9 yesterday. I think we’re just going to have to accept that Janna has low hemoglobin and leave it at that. She’s healthy, she’s growing, she’s active and we give her more iron than necessary. She’s just gonna be low and no one knows why. Although we’re testing for Celiac’s Disease next Friday at the Cardiologist, Dr. Tayloe is nearly 100ure that she doesn’t have this. He doesn’t think she’d be thriving so well if she had CD. Janna showed off for the office staff as Aunt Gay brought her in the office area for check-out. She twirled round and round as she loves to do and did a little dance, gave big smiles and did a little sign language too. She even signed and said ‘Kit Cat’ for Dr. Tayloe as there was a big picture of a puppy and cat on the wall in her patient room. We still have not seen any more of Sox (the kitty that came before Christmas). Janna still signs and looks for the kitty occasionally. Maybe Sox will show back up one day.
I’ll try to update Janna’s page again soon with information from her February 9th Cardiology appointment and pictures.
May God bless you all, AJ
February 11, 2007
We had a trying visit at the cardiologist this past Friday. Janna is fearful every time now, so even weight, height, and head measurements are torture for her. She is never calm enough for a blood pressure reading. We did get her calm enough for Dr. Milazzo to take a listen to her heart and she did fine for the echo as she usually does. They pop a video in the overhead TV and dim the lights and she lets them take pictures of her heart easily, except she tries to help and also likes eating the gel they spread over her chest while the probe takes pictures. They saved the best for last! Once again, we wrapped Janna in a sheet so she couldn't move - she loved that, NOT! Even daddy helped hold her still this time for the blood draw. And again, Mrs. Ann (we love Mrs. Ann) got Janna on the first stick! They are testing for Celiac's Disease (mentioned in a recent journal) and also checking her thyroid and platelets. They are aware that her hemaglobin was low again at the Peds last week. We should hear something this week from the results. Janna was pitiful Friday afternoon. Her arm was really hurting her. I think they may have wrapped it too tight while drawing blood as she's never shown signs before of her arm hurting after a blood draw. She really favored that arm, would look at it/point to it, and just cry if she tried to move it or use it. Some tylenol helped ease it off and she was using it again in no time.
Well, I can't take credit for the pictures you're seeing. They were taken by a co-worker of mine, Tom Rains, the day after Janna's birthday. We didn't know how Janna would do since she's become so mobile and Joe really didn't think Tom would be able to get any good pictures. He thought we were wasting our time driving to Garner since Janna is so active now. But as you can see, Tom did a wonderful job of capturing some great treasures of Janna even though she was on the go most of the session. We won't be going to Sears any more as they always rush us! Please visit Tom's photography site at Tom's Site to see more of his great work. Or, if this doesn't work for you, just type in www.thomasrainsphotography.com
Our TWO year old Valentine Girl;
This was a dress of my grand-daddy's, who was born in 1918. I'll post a better one eventually so you can see the whole dress. And we had to bring along 'Duckie' - Janna's security for professional picture taking and nite-nite time.
Friday, February 2, 2007
HAPPY 2nd BIRTHDAY JANNA MACIE!!!
Mama and Daddy love you VERY MUCH!
We cannot even believe that our baby girl is 2 today. She’s our Ground Hog baby and she loves playing with her shadow. Lord willing, we’re guaranteed another year of smiles, health, and happiness with the good girl.
Janna had her routine well-baby check-up yesterday with Dr. Tayloe. She weighs 25lb. and 4 oz., is 32 inches tall, and her head is GROWING – finally, another few centimeters – 45cm round. Boy did she get mad about the finger prick – I think she despised the band-aid wrapped around her finger worse than the prick. Once she got it off she calmed down. Once again, her hemoglobin is low – we got a 9.9 yesterday. I think we’re just going to have to accept that Janna has low hemoglobin and leave it at that. She’s healthy, she’s growing, she’s active and we give her more iron than necessary. She’s just gonna be low and no one knows why. Although we’re testing for Celiac’s Disease next Friday at the Cardiologist, Dr. Tayloe is nearly 100ure that she doesn’t have this. He doesn’t think she’d be thriving so well if she had CD. Janna showed off for the office staff as Aunt Gay brought her in the office area for check-out. She twirled round and round as she loves to do and did a little dance, gave big smiles and did a little sign language too. She even signed and said ‘Kit Cat’ for Dr. Tayloe as there was a big picture of a puppy and cat on the wall in her patient room. We still have not seen any more of Sox (the kitty that came before Christmas). Janna still signs and looks for the kitty occasionally. Maybe Sox will show back up one day.
I’ll try to update Janna’s page again soon with information from her February 9th Cardiology appointment and pictures.
May God bless you all, AJ
Saturday January 13, 2007
Time has not allowed me to keep you updated on Janna lately – sorry about that.
We had a blessed Christmas and hope that you did too. HAPPY BIRTHDAY JESUS!
Janna is doing well. She fought a little cold and flu-like virus right after Christmas but she definitely ‘fought’. She tried her best to feel good. She lost her food for several days and got to the point she would not eat Kix cereal – we really knew she was sick then! She drank well and did not run much of a fever so we avoided the doctor. She soon bounced back and has a good appetite again. We are still waiting to hear back from the Hematologist. Janna’s Cardiologist is calling them again. Also, next month, we will do another blood draw to test for Celiac’s Disease . People who have celiac disease cannot tolerate a protein called gluten, found in wheat, rye, and barley. And we know Janna eats plenty of these – she is the carb queen! Although she is not showing many symptoms of CD, the unexplained low Hemaglobin can be symptom. So we have a busy week planned next month, her birthday, 2 year Pediatric appointment and an echo and blood draw at the cardiologist.
Janna is picking up more and more signs although she chooses to remain quiet most of the time with her sweet voice. We are very thankful for her communication though. She is still enjoying Speech Therapy and is doing really well there.
I was just talking to a couple of co-workers and we were reminding each other that Jesus is coming back – He is! We have to be ready, but we also have STAY ready, we were discussing. Stay focused and not get caught up in the world of ‘busyness’. Let’s all strive to keep our hearts and minds on Christ, on things of importance and we all know that the most important things are not ‘things’ at all. Praying that you and your family are ready and ‘staying’ ready for that grand ‘awakening’ day. My words are few, I owe you many pictures of our smiling angel, so here they are. Hope the number does NOT crash your computer.
Watching and waiting in His love, aj
She LOVES to be outside!
Christmas Eve Day at Uncle Randy and Aunt Pam’s
Janna got some tissue paper and ran. Who needs presents?
She just wanted to play with her tissue paper.
Okay, what are ya’ll calling me for – can’t you see I’m busy eating paper?
Okay – I’ll open one.
A COOL train from Uncle Sammy and Aunt Cammy and a Pirate Ship for the tub!
Now daddy is getting some sugar……
and putting Janna in the ‘Figure Four’ – says he has to provide for her what his older brothers always provided for him – LOL.
Cheeky grin with PaPa.
Playing with her Snowman Bandana
Janna’s cool Camels that Uncle Bryan sent from Egypt.
An Elmo DVD from MeMa & PaPa – cool, it’s about Janna’s favorite time – bath time!
And a new Tea Party car from Uncle Randy and family.
Christmas Eve at G-ma & G-Pa Best’
Alright! A Miss Patty Cake DVD!
If only someone would put it in the TV?
Could you help me Grandma?
Oh no – not cheerleading stuff – that’s what my cousin Caroline got.
Why won’t they put this one in?
Hey Grandma, what about Miss Patty Cake?
I sure would like to watch my new DVD.
It sounds very interesting…
Oh, it doesn’t look like anyone is gonna put it in.
Well, I really like dancing with my new Snowman from G-ma & G-pa.
Wow! They finally put Miss Patty Cake in! YAY!
Christmas Morning
Thanks to a dear lady in VA, Janna got a TMX Elmo (at normal price).
She is really enjoying his laughter!
And she REALLY likes her new Baby Einstein Musical Animal Book!
And her new desk from MeMa & PaPa’s neighbor, Gerri.
Christmas Day at G-ma & G-Pa Best’
This is a dress that was Janna’s great-grandaddy Best’ when he was a little boy.
So, it’s gotta be around 90 years old – still looks pretty good, eh? One of daddy’s dear aunts kept it in a trunk all these years and left it for him when she died a couple years ago at age 103. Janna wouldn’t sit still in front of the tree so I had to get pictures ‘on the go’.
Janna got a miniature drum set from ‘Aunt’ April and family. Joe says it is absolutely unacceptable! LOL, seriously he enjoys it as much as Janna does.
Janna being impatient as Hunter assembles the drum set.
He was so proud – Hunter plays drums and Janna likes to play his real drum set when she stays at ‘Aunt’ April’s house. In fact, he was 1 out of 3 chosen from his school to be in the VaTech Honorary Band. He’ll be heading to VA toward the end of this week. 
Haleigh and Kendall (Hunter’s sisters) also excited and proud of Janna and her new drum set.
Wha?t! Do I hear Miss Patty Cake on the TV??!!!
Oh yea!
She’s my favorite! (Do you think she’s close enough to the TV?)
Janna’s FAVORITE past time – digging through her DVDs until she finds one particular ‘Miss Patty Cake’ one with the world/globe on it.
Our sick baby girl trying to eat and smile.
She had enough of the cereal and the camera!
MeMa put Janna’s hair up after bathtime, so she had a curly top and big smiles this day.
Daddy had to make sure Mitch was ready for Christmas!
Janna got a kitty cat just before Christmas – ha, we didn’t order him. He/She just showed up and Janna fell in love with it. She walked around for days signing and saying ‘Kih Kat’. 
She’s pretty sure she doesn’t like dirt now.
‘Sox’ was the cats name – since Joe & PaPa are big Red Sox fans and also because it’s a word that Janna likes to say. She/he was a good cat – but we don’t know where Sox took off to or if a fox got her/him or what? Sox is missing and Janna is still looking for the ‘Kih Kat’.
I let Jack out and up the tree Sox went. She/he finally worked down low enough where I could help her/him down (after Jack went back into his fence that is).
Uhhh, I didn’t say you could take my picture in here momma!
Hasn’t that scar healed up nicely?
Bubble time. Usually when Janna gets into the bath she starts signing ‘bubbles’.
Can you tell she loves Bath Time?!
Move over Randy Johnson! Janna getting ready for softball – huh, actually she enjoys throwing all of her toys out of the bath tub.
Peek-A-Boo!
Just a little excited.
See ya’ll soon……
Saturday, January 13, 2007
Time has not allowed me to keep you updated on Janna lately – sorry about that.
We had a blessed Christmas and hope that you did too. HAPPY BIRTHDAY JESUS!
Janna is doing well. She fought a little cold and flu-like virus right after Christmas but she definitely ‘fought’. She tried her best to feel good. She lost her food for several days and got to the point she would not eat Kix cereal – we really knew she was sick then! She drank well and did not run much of a fever so we avoided the doctor. She soon bounced back and has a good appetite again. We are still waiting to hear back from the Hematologist. Janna’s Cardiologist is calling them again. Also, next month, we will do another blood draw to test for Celiac’s Disease . People who have celiac disease cannot tolerate a protein called gluten, found in wheat, rye, and barley. And we know Janna eats plenty of these – she is the carb queen! Although she is not showing many symptoms of CD, the unexplained low Hemaglobin can be symptom. So we have a busy week planned next month, her birthday, 2 year Pediatric appointment and an echo and blood draw at the cardiologist.
Janna is picking up more and more signs although she chooses to remain quiet most of the time with her sweet voice. We are very thankful for her communication though. She is still enjoying Speech Therapy and is doing really well there.
I was just talking to a couple of co-workers and we were reminding each other that Jesus is coming back – He is! We have to be ready, but we also have STAY ready, we were discussing. Stay focused and not get caught up in the world of ‘busyness’. Let’s all strive to keep our hearts and minds on Christ, on things of importance and we all know that the most important things are not ‘things’ at all. Praying that you and your family are ready and ‘staying’ ready for that grand ‘awakening’ day. My words are few, I owe you many pictures of our smiling angel, so here they are. Hope the number does NOT crash your computer.
Watching and waiting in His love, aj
She LOVES to be outside!
Christmas Eve Day at Uncle Randy and Aunt Pam’s
Janna got some tissue paper and ran. Who needs presents?
She just wanted to play with her tissue paper.
Okay, what are ya’ll calling me for – can’t you see I’m busy eating paper?
Okay – I’ll open one.
A COOL train from Uncle Sammy and Aunt Cammy and a Pirate Ship for the tub!
Now daddy is getting some sugar……
and putting Janna in the ‘Figure Four’ – says he has to provide for her what his older brothers always provided for him – LOL.
Cheeky grin with PaPa.
Playing with her Snowman Bandana
My cool Camels that Uncle Bryan sent me from Egypt.
An Elmo DVD from MeMa & PaPa – cool, it’s about my favorite time – bath time!
And a new Tea Party car from Uncle Randy and family.
Christmas Eve at G-ma & G-Pa Best’
Alright! A Miss Patty Cake DVD!
If only someone would put it in the TV?
Could you help me Grandma?
Oh no – not cheerleading stuff – that’s what my cousin Caroline got.
Why won’t they put this one in?
Hey Grandma, what about Miss Patty Cake?
I sure would like to watch my new DVD.
It sounds very interesting…
Oh, it doesn’t look like anyone is gonna put it in.
Well, I really like dancing with my new Snowman from G-ma & G-pa.
Wow! They finally put Miss Patty Cake in! YAY!
Christmas Morning
Thanks do a dear lady in VA, Janna got a TMX Elmo (at normal price).
She is really enjoying his laughter!
And she REALLY likes her new Baby Einstein Musical Animal Book!
And her new desk from MeMa & PaPa’s neighbor Gerri.
Christmas Day at G-ma & G-Pa Best’
This is a dress that was Janna’s great-grandaddy Best’ when he was a little boy.
So, it’s gotta be around 90 years old – still looks pretty good, eh? One of daddy’s dear aunts kept it in a trunk all these years and left it for him when she died a couple years ago at age 103. Janna wouldn’t sit still in front of the tree so I had to get pictures ‘on the go’.
Janna got a miniature drum set from ‘Aunt’ April and family. Joe says it is absolutely unacceptable! LOL, seriously he enjoys it as much as Janna does.
Janna being impatient as Hunter assembles the drum set.
He was so proud – Hunter plays drums and Janna likes to play his real set when she stays at ‘Aunt’ April’s house. In fact, he was 1 out of 3 chosen from his school to be in the VaTech Honorary Band. He’ll be heading to VA toward the end of this week.
Haleigh and Kendall (Hunter’s sisters) also excited and proud of Janna and her new drum set.
What! Do I hear Miss Patty Cake on the TV??!!!
Oh yea!
She’s my favorite! (Do you think she’s close enough?)
Janna’s FAVORITE past time – digging through her DVDs until she finds one particular ‘Miss Patty Cake’ one with the world/globe on it.
Our sick baby girl trying to eat and smile.
She had enough of the cereal and the camera!
MeMa put Janna’s hair up after bathtime, so she had a curly top and big smiles this day.
Daddy had to make sure Mitch was ready for Christmas!
Janna got a kitty cat just before Christmas – ha, we didn’t order him. He/She just showed up and Janna fell in love with it. She walked around for days signing and saying ‘Kih Kat’.
She’s pretty sure she doesn’t like dirt now.
‘Sox’ was the cats name – since Joe & PaPa are big Red Sox fans and also because it’s a word that Janna likes to say. She/he was a good cat – but we don’t know where Sox took off to or if a fox got her/him or what? Sox is missing and Janna is still looking for the ‘Kih Kat’.
I let Jack out and up the tree Sox went. She/he finally worked down low enough where I could help her/him down (after Jack went back into his fence that is).
Uhhh, I didn’t say you could take my picture in here momma!
Hasn’t that scar healed up nicely?
Bubble time. Usually when Janna gets into the bath she starts signing ‘bubbles’.
Can you tell she loves Bath Time?!
Move over Randy Johnson! Janna getting ready for softball – huh, actually she enjoys throwing all of her toys out of the bath tub.
Peek-A-Boo!
Just a little excited.
See ya’ll soon……
Saturday, January 13, 2007
Time has not allowed me to keep you updated on Janna lately – sorry about that.
We had a blessed Christmas and hope that you did too. HAPPY BIRTHDAY JESUS!
Janna is doing well. She fought a little cold and flu-like virus right after Christmas but she definitely ‘fought’. She tried her best to feel good. She lost her food for several days and got to the point she would not eat Kix cereal – we really knew she was sick then! She drank well and did not run much of a fever so we avoided the doctor. She soon bounced back and has a good appetite again. We are still waiting to hear back from the Hematologist. Janna’s Cardiologist is calling them again. Also, next month, we will do another blood draw to test for Celiac’s Disease . People who have celiac disease cannot tolerate a protein called gluten, found in wheat, rye, and barley. And we know Janna eats plenty of these – she is the carb queen! Although she is not showing many symptoms of CD, the unexplained low Hemaglobin can be symptom. So we have a busy week planned next month, her birthday, 2 year Pediatric appointment and an echo and blood draw at the cardiologist.
Janna is picking up more and more signs although she chooses to remain quiet most of the time with her sweet voice. We are very thankful for her communication though. She is still enjoying Speech Therapy and is doing really well there.
I was just talking to a couple of co-workers and we were reminding each other that Jesus is coming back – He is! We have to be ready, but we also have STAY ready, we were discussing. Stay focused and not get caught up in the world of ‘busyness’. Let’s all strive to keep our hearts and minds on Christ, on things of importance and we all know that the most important things are not ‘things’ at all. Praying that you and your family are ready and ‘staying’ ready for that grand ‘awakening’ day. My words are few, I owe you many pictures of our smiling angel, so here they are. Hope the number does NOT crash your computer.
Watching and waiting in His love, aj
She LOVES to be outside!
Christmas Eve Day at Uncle Randy and Aunt Pam’s
Janna got some tissue paper and ran. Who needs presents?
She just wanted to play with her tissue paper.
Okay, what are ya’ll calling me for – can’t you see I’m busy eating paper?
Okay – I’ll open one.
A COOL train from Uncle Sammy and Aunt Cammy and a Pirate Ship for the tub!
Now daddy is getting some sugar……
and putting Janna in the ‘Figure Four’ – says he has to provide for her what his older brothers always provided for him – LOL.
Cheeky grin with PaPa.
Playing with her Snowman Bandana
My cool Camels that Uncle Bryan sent me from Egypt.
An Elmo DVD from MeMa & PaPa – cool, it’s about my favorite time – bath time!
And a new Tea Party car from Uncle Randy and family.
Christmas Eve at G-ma & G-Pa Best’
Alright! A Miss Patty Cake DVD!
If only someone would put it in the TV?
Could you help me Grandma?
Oh no – not cheerleading stuff – that’s what my cousin Caroline got.
Why won’t they put this one in?
Hey Grandma, what about Miss Patty Cake?
I sure would like to watch my new DVD.
It sounds very interesting…
Oh, it doesn’t look like anyone is gonna put it in.
Well, I really like dancing with my new Snowman from G-ma & G-pa.
Wow! They finally put Miss Patty Cake in! YAY!
Christmas Morning
Thanks do a dear lady in VA, Janna got a TMX Elmo (at normal price).
She is really enjoying his laughter!
And she REALLY likes her new Baby Einstein Musical Animal Book!
And her new desk from MeMa & PaPa’s neighbor Gerri.
Christmas Day at G-ma & G-Pa Best’
This is a dress that was Janna’s great-grandaddy Best’ when he was a little boy.
So, it’s gotta be around 90 years old – still looks pretty good, eh? One of daddy’s dear aunts kept it in a trunk all these years and left it for him when she died a couple years ago at age 103. Janna wouldn’t sit still in front of the tree so I had to get pictures ‘on the go’.
Janna got a miniature drum set from ‘Aunt’ April and family. Joe says it is absolutely unacceptable! LOL, seriously he enjoys it as much as Janna does.
Janna being impatient as Hunter assembles the drum set.
He was so proud – Hunter plays drums and Janna likes to play his real drum set when she stays at ‘Aunt’ April’s house. In fact, he was 1 out of 3 chosen from his school to be in the VaTech Honorary Band. He’ll be heading to VA toward the end of this week.
Haleigh and Kendall (Hunter’s sisters) also excited and proud of Janna and her new drum set.
Wha?t! Do I hear Miss Patty Cake on the TV??!!!
Oh yea!
She’s my favorite! (Do you think she’s close enough to the TV?)
Janna’s FAVORITE past time – digging through her DVDs until she finds one particular ‘Miss Patty Cake’ one with the world/globe on it.
Our sick baby girl trying to eat and smile.
She had enough of the cereal and the camera!
MeMa put Janna’s hair up after bathtime, so she had a curly top and big smiles this day.
Daddy had to make sure Mitch was ready for Christmas!
Janna got a kitty cat just before Christmas – ha, we didn’t order him. He/She just showed up and Janna fell in love with it. She walked around for days signing and saying ‘Kih Kat’.
She’s pretty sure she doesn’t like dirt now.
‘Sox’ was the cats name – since Joe & PaPa are big Red Sox fans and also because it’s a word that Janna likes to say. She/he was a good cat – but we don’t know where Sox took off to or if a fox got her/him or what? Sox is missing and Janna is still looking for the ‘Kih Kat’.
I let Jack out and up the tree Sox went. She/he finally worked down low enough where I could help her/him down (after Jack went back into his fence that is).
Uhhh, I didn’t say you could take my picture in here momma!
Hasn’t that scar healed up nicely?
Bubble time. Usually when Janna gets into the bath she starts signing ‘bubbles’.
Can you tell she loves Bath Time?!
Move over Randy Johnson! Janna getting ready for softball – huh, actually she enjoys throwing all of her toys out of the bath tub.
Peek-A-Boo!
Just a little excited.
See ya’ll soon……
Wednesday, December 13, 2006
Janna had a busy day last Friday. We started the day off with the second half of her flu shot at Goldsboro Peds. Then I suggested they do a finger prick to see if her hemoglobin had come up any over the last months. It’s still low, but not terrible – 10.3. Then off to the cardiologist where we finally got an echo that looked just the same as last visit – YAY! Her leak is no worse and he did NOT increase her meds this time. In fact (by Pharmacy mistake once again) she got to drop one of the diuretics. When the cardiologist found out what potency she was on for the last couple of months (which was pretty much nothing because Pharm prepared it much lower than Rx), he said just drop it since she’s been doing well without it. So we’re now on Lasix, Enalapril, Prilosec, and of course the yucky vitamin, Poly-Vi-Sol with Iron. He called the Duke Hematologist that Janna saw this Summer to inform her of the continued low hemoglobin. She requested a CBC and so they wrapped Janna in a sheet as we all held her down for a blood draw. It was the easiest/best stick ever!!! We were all ecstatic as daddy stood in the corner praying. We received the blood results this week. Hemoglobin 10.4, and Red Blood Cell count low (around 500,000) but everything else looked great! We’ll wait to hear what the Hematologist thinks about this. You may recall that they decided awhile back that this low Hemoglobin is NOT from low Iron. So Janna has them stumped. We just keep praying that she stays healthy and happy. I’ve not had much time at all to update but wanted to get this info on her page. I will be posting more Christmas pictures soon. Oh, I almost forgot, Janna weighed in at 24lbs. 3oz. and is 31.2 inches tall. She’s not gaining as fast now that she’s walking and more active. But she is growing. We continue to place her in God’s care and pray for health, health, health. Thanks to all who keep track of our angel – she is truly a blessing to our family.
In His love, AJ
"But you remain the same. Your years will never end. Our children will live with you. Their sons and daughters will be safe in your care."
Psalm 102:27-28 NIRV
Tuesday, November 21st, 2006
HAPPY THANKSGIVING!!!
I’ve finally made it back for an entry. There’s never enough time to keep you all updated.
Speech Therapy (ST) is paying off! We’re very proud of Janna’s progress. She has been learning a lot from ST and using what she’s learning at home. Well, last week she decided to perform at ST and finally showed off for her therapist. MeMa & PaPa said that Michelle (ST) about jumped through the roof when Janna said, ‘bubble’ and ‘pop’. She also signed two words together for Michelle – ‘more bubbles’. Obviously Mrs. Michelle is fun and has a lot of fun stuff and Janna really enjoys going to ST. She also uses a computer with a link pad with animals on it. When Janna presses on a certain animal on the pad, that animal will make its’ sound and walk across the computer screen. She recently barked like a dog for Mrs. Michelle too. I really need to sit down and calculate how many signs Janna has. Joe recently commented that she knows more sign language than he does – LOL. We have three of the ‘Signing Times’ DVDs and Janna has really learned a lot from these (so has mama and daddy). This has been so wonderful because she can communicate with us even though she doesn’t have command of her sweet little voice yet. And it is sweet. She’s recently been saying ‘more’ rather than signing it. It comes out more like ‘muh’ but it is so sweet. And this past week she has started saying ‘yes’, in it’s correct meaning. Her yes is more like a ‘yeah’ in a whisper and it’s so cute. She’s truly southern – LOL. We can ask her if she wants something or other and she’ll whisper, ‘yeah’. If she doesn’t want it, she says nothing – maybe a good thing that she isn’t saying ‘NO!’ yet, huh? Janna has been mouthing a lot of sounds and words but just hasn’t made the sounds that come with them. Her therapist says that this is a really good sign. In fact, she thinks that when Janna ever lets go, we won’t be able to keep her quiet. We are so thankful to God for this recent progress with words. She’s had ‘dada’, ‘mama’, and ‘umm guh’ (for umm good) down pat for awhile so we are so glad to hear a few more words lately. She’s always kinda said ‘WOW’ for Brother P (our retired Pastor) as he’s always said this to her when he sees her. Now she’s really saying it louder – thanks Brother P for the ST you’ve given but mainly for the example and Shepherd you have been and still are to our church family and community. Janna spits out a ‘MeMa’ & ‘PaPa’ at times and mouths ‘PaPa’ a lot. So we’re praying she’ll keep up the good work. Here are the signs that I can think of that she knows.
Signs that Janna uses regularly;
More
Milk
Cereal
Big
Cracker
All Done
Ball
Play
Swing
Daddy
Mama
G-pa
G-ma
Night Night
Bubble
Pop (Pop Corn)
Happy
Home
Signs that Janna uses on occasion;
Shoes, Fish, Cow, Dirty, Bath, Elephant, Girl, Bird, Dog, Hot, Cold
Janna can point to ears, nose, eyes, tummy and she really likes the ‘Where is Thumpkin?’ song and starts wiggling her pointer finger when she wants us to sing it. She can do ‘Itsy Bitsy Spider’ motions and a few other motion songs. She doesn’t always get all the motions in during a song but she has put them all together at times. I can ask her to wiggle, wiggle and she’ll wiggle back and forth. She can find her ball, drum, or duck in a room full of toys and she will hand over any object to mama or daddy if she isn’t wanting to hang on to it too terribly for herself – LOL. She really likes imitating the kids on her videos that are singing and doing actions to various songs. I think back - it was so funny when she first started watching the ‘Signing Times’ videos, she would take her left arm and just sling it hard back and forth from her tummy to her back because she knew the people were using their arms/hands to make signs but she just couldn’t do it then. She was trying so hard though, slinging that arm. And even now a lot of her signs are approximations but they are her signs none the less. She has her very own sign for cereal. The true sign is to use your pointer finger, out stretched from a fist, to wipe across your chin (as if you are wiping milk off of your chin). She refuses to do this at her chin but rather does it to her other palm/wrist straight on. I’ll attach a picture below.
It may sound kinda silly to be writing about what Janna can do but I guess a lot of emphasis is put on milestones and such for a child who is differently-abled. We know she is sweet and tough little Janna no matter what she can or cannot do yet or no matter when she does what. We have high expectations and we also have one determined little angel. And we truly believe that God has heard and is answering the many prayers that have been lifted to Him on Janna’s behalf.
I’ve been meaning to post this story “Welcome to Holland”, for some time. It doesn’t completely apply to us as we were not planning on a baby/Janna or expecting her to be someone in particular. But for all those parents that did plan and dream for that new baby, this can really hit home. We’ve been living in Holland for nearly two years now, whether we planned on it or not. We sure are loving Holland – it’s the most beautiful place I know of on Earth.
In case you cannot open this link “Welcome to Holland” written by Emily Perl Kingsley, I’ll post the story below;
Welcome to Holland
Now, back to ‘Signing Times’. There’s a song at the end of one of these videos that goes something like this, ‘maybe we won’t find easy, but baby we found the good.’ We surely have been blessed by God with the ‘good’. No, it’s not easy to have a million doctor’s appointments during your child’s first year. It’s not easy to take shots and get blood drawn from a turnip named Janna. It’s not easy to watch your child fight to live or eat. It’s not easy to juggle work, family time, therapy, day care, and other appointments.
A BIG THANKS TO ME MA & PA PA, GRANDMA & GRANDPA, MA SUE, GRANNY & AUNT LINDA (for caring for our angel in her early, critical days), GRANDPA & AUNT CHANDA for watching Janna in those first weeks so I could get a shower – LOL, AUNT LIZ for watching and playing with Janna every time she visits from CO, AUNT PAM and family, AUNT CARLA and family, AUNT SHEILA & UNCLE RODNEY from church, AUNT APRIL and family for helping us take care of Janna – she has the BEST grandparents, baby-sitters/day-care family in the world, AUNT GAYE (for scheduling appointments on Friday’s for Janna and getting us in the back door at the Peds (to avoid germs) and for picking up medicine for us ALL the time). We could never do it all without you. That’s how we get by – God provides support through wonderful family and friends like you.
AND THANKS TO ALL THOSE THAT HAVE PRAYED, SENT CARDS AND ENCOURAGEMENT, OFFERED A HELPING HAND MANY TIMES AND PLEASE FORGIVE ME IF I LEFT ANY NAMES OFF OF THE LIST ABOVE – I CANNOT POSSIBLY NAME EVERY ONE THAT HAS GIVEN AND MEANT SO MUCH TO US AND JANNA OVER THE LAST TWO YEARS.
Can you believe Janna will be two in February!?
The biggest THANKSGIVING goes to our Lord and Father, for watching out for us all, for surrounding and defending us everyday. His strength is like no other and we would be so lost without Him and His everlasting love.
1 Thessalonians 5:16-22 (NIV)
16 Be joyful always; 17 pray continually;
18 give thanks in all circumstances, for this is God's will for you in Christ Jesus.
19 Do not put out the Spirit's fire; 20 do not treat prophecies with contempt.
21 Test everything. Hold on to the good. 22 Avoid every kind of evil.
So, how do we hold on to the ‘good’? By always being joyful, by always praying, by always giving thanks - no matter what is happening. Why? Because this is what God wants us to do and who better knows what we need to do than the One who created us?! Keep the fire of God alive – don’t turn away from His Spirit. Grab a hold of the ‘good’ and steer clear of evil. There’s no other path like this one - walking WITH God.
We pray that you and your family have a blessed and beautiful Thanksgiving.
In His love, AJ, Joe, & Janna baby
How many blessings can you count?
Sleeping with her Duckie in the sweet sleeper Uncle Sammy & Aunt Cammie gave her – she has recently outgrown it : (
Hey Mama! 
YAY! Cool Weather Is Here! 
Wow, this leaf looks pretty good. 
It IS good! 
Just being cute. 
Signing ‘Cereal’. 
Signing ‘More’. 
Getting ‘Muh’. 
Eating ‘Muh’. She’s gonna turn into Kix Cereal I believe. 
Sweet Breakfast Face. 
Silly Breakfast Face. 
Swinging and playing on a warm November Day. (Veteran’s Day 2006) 
This leaf is ‘guh’ too! 
Well, there’s Jack! 
Hey Jackie Boy! I thought daddy gave you away since you’ve been playing Houdini so much lately.
(Electric fence is going up today as I type) 
He’s a ‘guh’ boy! 
Well, most of the time. 
Oh my! 
YUK! 
I can’t believe he just licked me! 
Okay, I’m going back for some more. 
That’s it, I’m outta here! 
Alright – I got away! 
I just can’t decide if I want him to lick me or not! 
Let’s go play in the leaves mama. 
Loving my swing and ponies, November 17th! 
Mitch & Max are getting really furry for the winter – they are preparing as if they were on the Shetland Islands (shhhhh, don’t tell them that NC can be pretty warm, even in Winter).
Max
Mitch
Swinging some more on November 18th. 
SO HIGH! 
This rope ain’t too bad either! 
And yes, we have roses blooming in November – from the ‘gift that keeps on giving’ as daddy says. He gave this to mama last Valentine’s Day – ain’t they pretty?! 
Janna signing ‘more’, as in she wants mama to push her swing some more! 
Back to the leaves…
Outside is SO FUN, I think I’ll start to RUN! (We’re in trouble now) 
Welcome to Holland
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.
By Emily Perl Kingsley
Wednesday, December 13, 2006
Janna had a busy day last Friday. We started the day off with the second half of her flu shot at Goldsboro Peds. Then I suggested they do a finger prick to see if her hemoglobin had come up any over the last months. It’s still low, but not terrible – 10.3. Then off to the cardiologist where we finally got an echo that looked just the same as last visit – YAY! Her leak is no worse and he did NOT increase her meds this time. In fact (by Pharmacy mistake once again) she got to drop one of the diuretics. When the cardiologist found out what potency she was on for the last couple of months (which was pretty much nothing because Pharm prepared it much lower than Rx), he said just drop it since she’s been doing well without it. So we’re now on Lasix, Enalapril, Prilosec, and of course the yucky vitamin, Poly-Vi-Sol with Iron. He called the Duke Hematologist that Janna saw this Summer to inform her of the continued low hemoglobin. She requested a CBC and so they wrapped Janna in a sheet as we all held her down for a blood draw. It was the easiest/best stick ever!!! We were all ecstatic as daddy stood in the corner praying. We received the blood results this week. Hemoglobin 10.4, and Red Blood Cell count low (around 500,000) but everything else looked great! We’ll wait to hear what the Hematologist thinks about this. You may recall that they decided awhile back that this low Hemoglobin is NOT from low Iron. So Janna has them stumped. We just keep praying that she stays healthy and happy. I’ve not had much time at all to update but wanted to get this info on her page. I will be posting more Christmas pictures soon. Oh, I almost forgot, Janna weighed in at 24lbs. 3oz. and is 31.2 inches tall. She’s not gaining as fast now that she’s walking and more active. But she is growing. We continue to place her in God’s care and pray for health, health, health. Thanks to all who keep track of our angel – she is truly a blessing to our family.
In His love, AJ
"But you remain the same. Your years will never end. Our children will live with you. Their sons and daughters will be safe in your care."
Psalm 102:27-28 NIRV
Tuesday, November 21st, 2006
HAPPY THANKSGIVING!!!
I’ve finally made it back for an entry. There’s never enough time to keep you all updated.
Speech Therapy (ST) is paying off! We’re very proud of Janna’s progress. She has been learning a lot from ST and using what she’s learning at home. Well, last week she decided to perform at ST and finally showed off for her therapist. MeMa & PaPa said that Michelle (ST) about jumped through the roof when Janna said, ‘bubble’ and ‘pop’. She also signed two words together for Michelle – ‘more bubbles’. Obviously Mrs. Michelle is fun and has a lot of fun stuff and Janna really enjoys going to ST. She also uses a computer with a link pad with animals on it. When Janna presses on a certain animal on the pad, that animal will make its’ sound and walk across the computer screen. She recently barked like a dog for Mrs. Michelle too. I really need to sit down and calculate how many signs Janna has. Joe recently commented that she knows more sign language than he does – LOL. We have three of the ‘Signing Times’ DVDs and Janna has really learned a lot from these (so has mama and daddy). This has been so wonderful because she can communicate with us even though she doesn’t have command of her sweet little voice yet. And it is sweet. She’s recently been saying ‘more’ rather than signing it. It comes out more like ‘muh’ but it is so sweet. And this past week she has started saying ‘yes’, in it’s correct meaning. Her yes is more like a ‘yeah’ in a whisper and it’s so cute. She’s truly southern – LOL. We can ask her if she wants something or other and she’ll whisper, ‘yeah’. If she doesn’t want it, she says nothing – maybe a good thing that she isn’t saying ‘NO!’ yet, huh? Janna has been mouthing a lot of sounds and words but just hasn’t made the sounds that come with them. Her therapist says that this is a really good sign. In fact, she thinks that when Janna ever lets go, we won’t be able to keep her quiet. We are so thankful to God for this recent progress with words. She’s had ‘dada’, ‘mama’, and ‘umm guh’ (for umm good) down pat for awhile so we are so glad to hear a few more words lately. She’s always kinda said ‘WOW’ for Brother P (our retired Pastor) as he’s always said this to her when he sees her. Now she’s really saying it louder – thanks Brother P for the ST you’ve given but mainly for the example and Shepherd you have been and still are to our church family and community. Janna spits out a ‘MeMa’ & ‘PaPa’ at times and mouths ‘PaPa’ a lot. So we’re praying she’ll keep up the good work. Here are the signs that I can think of that she knows.
Signs that Janna uses regularly;
More
Milk
Cereal
Big
Cracker
All Done
Ball
Play
Swing
Daddy
Mama
G-pa
G-ma
Night Night
Bubble
Pop (Pop Corn)
Happy
Home
Signs that Janna uses on occasion;
Shoes, Fish, Cow, Dirty, Bath, Elephant, Girl, Bird, Dog, Hot, Cold
Janna can point to ears, nose, eyes, tummy and she really likes the ‘Where is Thumpkin?’ song and starts wiggling her pointer finger when she wants us to sing it. She can do ‘Itsy Bitsy Spider’ motions and a few other motion songs. She doesn’t always get all the motions in during a song but she has put them all together at times. I can ask her to wiggle, wiggle and she’ll wiggle back and forth. She can find her ball, drum, or duck in a room full of toys and she will hand over any object to mama or daddy if she isn’t wanting to hang on to it too terribly for herself – LOL. She really likes imitating the kids on her videos that are singing and doing actions to various songs. I think back - it was so funny when she first started watching the ‘Signing Times’ videos, she would take her left arm and just sling it hard back and forth from her tummy to her back because she knew the people were using their arms/hands to make signs but she just couldn’t do it then. She was trying so hard though, slinging that arm. And even now a lot of her signs are approximations but they are her signs none the less. She has her very own sign for cereal. The true sign is to use your pointer finger, out stretched from a fist, to wipe across your chin (as if you are wiping milk off of your chin). She refuses to do this at her chin but rather does it to her other palm/wrist straight on. I’ll attach a picture below.
It may sound kinda silly to be writing about what Janna can do but I guess a lot of emphasis is put on milestones and such for a child who is differently-abled. We know she is sweet and tough little Janna no matter what she can or cannot do yet or no matter when she does what. We have high expectations and we also have one determined little angel. And we truly believe that God has heard and is answering the many prayers that have been lifted to Him on Janna’s behalf.
I’ve been meaning to post this story “Welcome to Holland”, for some time. It doesn’t completely apply to us as we were not planning on a baby/Janna or expecting her to be someone in particular. But for all those parents that did plan and dream for that new baby, this can really hit home. We’ve been living in Holland for nearly two years now, whether we planned on it or not. We sure are loving Holland – it’s the most beautiful place I know of on Earth.
In case you cannot open this link “Welcome to Holland” written by Emily Perl Kingsley, I’ll post the story below;
Welcome to Holland
Now, back to ‘Signing Times’. There’s a song at the end of one of these videos that goes something like this, ‘maybe we won’t find easy, but baby we found the good.’ We surely have been blessed by God with the ‘good’. No, it’s not easy to have a million doctor’s appointments during your child’s first year. It’s not easy to take shots and get blood drawn from a turnip named Janna. It’s not easy to watch your child fight to live or eat. It’s not easy to juggle work, family time, therapy, day care, and other appointments.
A BIG THANKS TO ME MA & PA PA, GRANDMA & GRANDPA, MA SUE, GRANNY & AUNT LINDA (for caring for our angel in her early, critical days), GRANDPA & AUNT CHANDA for watching Janna in those first weeks so I could get a shower – LOL, AUNT LIZ for watching and playing with Janna every time she visits from CO, AUNT PAM and family, AUNT CARLA and family, AUNT SHEILA & UNCLE RODNEY from church, AUNT APRIL and family for helping us take care of Janna – she has the BEST grandparents, baby-sitters/day-care family in the world, AUNT GAYE (for scheduling appointments on Friday’s for Janna and getting us in the back door at the Peds (to avoid germs) and for picking up medicine for us ALL the time). We could never do it all without you. That’s how we get by – God provides support through wonderful family and friends like you.
AND THANKS TO ALL THOSE THAT HAVE PRAYED, SENT CARDS AND ENCOURAGEMENT, OFFERED A HELPING HAND MANY TIMES AND PLEASE FORGIVE ME IF I LEFT ANY NAMES OFF OF THE LIST ABOVE – I CANNOT POSSIBLY NAME EVERY ONE THAT HAS GIVEN AND MEANT SO MUCH TO US AND JANNA OVER THE LAST TWO YEARS.
Can you believe Janna will be two in February!?
The biggest THANKSGIVING goes to our Lord and Father, for watching out for us all, for surrounding and defending us everyday. His strength is like no other and we would be so lost without Him and His everlasting love.
1 Thessalonians 5:16-22 (NIV)
16 Be joyful always; 17 pray continually;
18 give thanks in all circumstances, for this is God's will for you in Christ Jesus.
19 Do not put out the Spirit's fire; 20 do not treat prophecies with contempt.
21 Test everything. Hold on to the good. 22 Avoid every kind of evil.
So, how do we hold on to the ‘good’? By always being joyful, by always praying, by always giving thanks - no matter what is happening. Why? Because this is what God wants us to do and who better knows what we need to do than the One who created us?! Keep the fire of God alive – don’t turn away from His Spirit. Grab a hold of the ‘good’ and steer clear of evil. There’s no other path like this one - walking WITH God.
We pray that you and your family have a blessed and beautiful Thanksgiving.
In His love, AJ, Joe, & Janna baby
How many blessings can you count?
Sleeping with her Duckie in the sweet sleeper Uncle Sammy & Aunt Cammie gave her – she has recently outgrown it : (
Hey Mama!
YAY! Cool Weather Is Here!
Wow, this leaf looks pretty good.
It IS good!
Just being cute.
Signing ‘Cereal’.
Signing ‘More’.
Getting ‘Muh’.
Eating ‘Muh’. She’s gonna turn into Kix Cereal I believe.
Sweet Breakfast Face.
Silly Breakfast Face.
Swinging and playing on a warm November Day. (Veteran’s Day 2006)
This leaf is ‘guh’ too!
Well, there’s Jack!
Hey Jackie Boy! I thought daddy gave you away since you’ve been playing Houdini so much lately.
(Electric fence is going up today as I type)
He’s a ‘guh’ boy!
Well, most of the time.
Oh my!
YUK!
I can’t believe he just licked me!
Okay, I’m going back for some more.
That’s it, I’m outta here!
Alright – I got away!
I just can’t decide if I want him to lick me or not!
Let’s go play in the leaves mama.
Loving my swing and ponies, November 17th!
Mitch & Max are getting really furry for the winter – they are preparing as if they were on the Shetland Islands (shhhhh, don’t tell them that NC can be pretty warm, even in Winter).
Max
Mitch
Swinging some more on November 18th.
SO HIGH!
This rope ain’t too bad either!
And yes, we have roses blooming in November – from the ‘gift that keeps on giving’ as daddy says. He gave this to mama last Valentine’s Day – ain’t they pretty?!
Janna signing ‘more’, as in she wants mama to push her swing some more!
Back to the leaves…
Outside is SO FUN, I think I’ll start to RUN! (We’re in trouble now)
Welcome to Holland
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.
By Emily Perl Kingsley
Tuesday, November 21, 2006
HAPPY THANKSGIVING!!!
I’ve finally made it back for an entry. There’s never enough time to keep you all updated.
Speech Therapy (ST) is paying off! We’re very proud of Janna’s progress. She has been learning a lot from ST and using what she’s learning at home. Well, last week she decided to perform at ST and finally showed off for her therapist. MeMa & PaPa said that Michelle (ST) about jumped through the roof when Janna said, ‘bubble’ and ‘pop’. She also signed two words together for Michelle – ‘more bubbles’. Obviously Mrs. Michelle is fun and has a lot of fun stuff and Janna really enjoys going to ST. She also uses a computer with a link pad with animals on it. When Janna presses on a certain animal on the pad, that animal will make its’ sound and walk across the computer screen. She recently barked like a dog for Mrs. Michelle too. I really need to sit down and calculate how many signs Janna has. Joe recently commented that she knows more sign language than he does – LOL. We have three of the ‘Signing Times’ DVDs and Janna has really learned a lot from these (so has mama and daddy). This has been so wonderful because she can communicate with us even though she doesn’t have command of her sweet little voice yet. And it is sweet. She’s recently been saying ‘more’ rather than signing it. It comes out more like ‘muh’ but it is so sweet. And this past week she has started saying ‘yes’, in it’s correct meaning. Her yes is more like a ‘yeah’ in a whisper and it’s so cute. She’s truly southern – LOL. We can ask her if she wants something or other and she’ll whisper, ‘yeah’. If she doesn’t want it, she says nothing – maybe a good thing that she isn’t saying ‘NO!’ yet, huh? Janna has been mouthing a lot of sounds and words but just hasn’t made the sounds that come with them. Her therapist says that this is a really good sign. In fact, she thinks that when Janna ever lets go, we won’t be able to keep her quiet. We are so thankful to God for this recent progress with words. She’s had ‘dada’, ‘mama’, and ‘umm guh’ (for umm good) down pat for awhile so we are so glad to hear a few more words lately. She’s always kinda said ‘WOW’ for Brother P (our retired Pastor) as he’s always said this to her when he sees her. Now she’s really saying it louder – thanks Brother P for the ST you’ve given but mainly for the example and Shepherd you have been and still are to our church family and community. Janna spits out a ‘MeMa’ & ‘PaPa’ at times and mouths ‘PaPa’ a lot. So we’re praying she’ll keep up the good work. Here are the signs that I can think of that she knows.
Signs that Janna uses regularly;
More
Milk
Cereal
Big
Cracker
All Done
Ball
Play
Swing
Daddy
Mama
G-pa
G-ma
Night Night
Bubble
Pop (Pop Corn)
Happy
Home
Signs that Janna uses on occasion;
Shoes, Fish, Cow, Dirty, Bath, Elephant, Girl, Bird, Dog, Hot, Cold
Janna can point to ears, nose, eyes, tummy and she really likes the ‘Where is Thumpkin?’ song and starts wiggling her pointer finger when she wants us to sing it. She can do ‘Itsy Bitsy Spider’ motions and a few other motion songs. She doesn’t always get all the motions in during a song but she has put them all together at times. I can ask her to wiggle, wiggle and she’ll wiggle back and forth. She can find her ball, drum, or duck in a room full of toys and she will hand over any object to mama or daddy if she isn’t wanting to hang on to it too terribly for herself – LOL. She really likes imitating the kids on her videos that are singing and doing actions to various songs. I think back - it was so funny when she first started watching the ‘Signing Times’ videos, she would take her left arm and just sling it hard back and forth from her tummy to her back because she knew the people were using their arms/hands to make signs but she just couldn’t do it then. She was trying so hard though, slinging that arm. And even now a lot of her signs are approximations but they are her signs none the less. She has her very own sign for cereal. The true sign is to use your pointer finger, out stretched from a fist, to wipe across your chin (as if you are wiping milk off of your chin). She refuses to do this at her chin but rather does it to her other palm/wrist straight on. I’ll attach a picture below.
It may sound kinda silly to be writing about what Janna can do but I guess a lot of emphasis is put on milestones and such for a child who is differently-abled. We know she is sweet and tough little Janna no matter what she can or cannot do yet or no matter when she does what. We have high expectations and we also have one determined little angel. And we truly believe that God has heard and is answering the many prayers that have been lifted to Him on Janna’s behalf.
I’ve been meaning to post this story “Welcome to Holland”, for some time. It doesn’t completely apply to us as we were not planning on a baby/Janna or expecting her to be someone in particular. But for all those parents that did plan and dream for that new baby, this can really hit home. We’ve been living in Holland for nearly two years now, whether we planned on it or not. We sure are loving Holland – it’s the most beautiful place I know of on Earth.
In case you cannot open this link “Welcome to Holland” written by Emily Perl Kingsley, I’ll post the story below;
Welcome to Holland
Now, back to ‘Signing Times’. There’s a song at the end of one of these videos that goes something like this, ‘maybe we won’t find easy, but baby we found the good.’ We surely have been blessed by God with the ‘good’. No, it’s not easy to have a million doctor’s appointments during your child’s first year. It’s not easy to take shots and get blood drawn from a turnip named Janna. It’s not easy to watch your child fight to live or eat. It’s not easy to juggle work, family time, therapy, day care, and other appointments.
A BIG THANKS TO ME MA & PA PA, GRANDMA & GRANDPA, MA SUE, GRANNY & AUNT LINDA (for caring for our angel in her early, critical days), GRANDPA & AUNT CHANDA for watching Janna in those first weeks so I could get a shower – LOL, AUNT LIZ for watching and playing with Janna every time she visits from CO, AUNT PAM and family, AUNT CARLA and family, AUNT SHEILA & UNCLE RODNEY from church, AUNT APRIL and family for helping us take care of Janna – she has the BEST grandparents, baby-sitters/day-care family in the world, AUNT GAYE (for scheduling appointments on Friday’s for Janna and getting us in the back door at the Peds (to avoid germs) and for picking up medicine for us ALL the time). We could never do it all without you. That’s how we get by – God provides support through wonderful family and friends like you.
AND THANKS TO ALL THOSE THAT HAVE PRAYED, SENT CARDS AND ENCOURAGEMENT, OFFERED A HELPING HAND MANY TIMES AND PLEASE FORGIVE ME IF I LEFT ANY NAMES OFF OF THE LIST ABOVE – I CANNOT POSSIBLY NAME EVERY ONE THAT HAS GIVEN AND MEANT SO MUCH TO US AND JANNA OVER THE LAST TWO YEARS.
Can you believe Janna will be two in February!?
The biggest THANKSGIVING goes to our Lord and Father, for watching out for us all, for surrounding and defending us everyday. His strength is like no other and we would be so lost without Him and His everlasting love.
1 Thessalonians 5:16-22 (NIV)
16 Be joyful always; 17 pray continually;
18 give thanks in all circumstances, for this is God's will for you in Christ Jesus.
19 Do not put out the Spirit's fire; 20 do not treat prophecies with contempt.
21 Test everything. Hold on to the good. 22 Avoid every kind of evil.
So, how do we hold on to the ‘good’? By always being joyful, by always praying, by always giving thanks - no matter what is happening. Why? Because this is what God wants us to do and who better knows what we need to do than the One who created us?! Keep the fire of God alive – don’t turn away from His Spirit. Grab a hold of the ‘good’ and steer clear of evil. There’s no other path like this one - walking WITH God.
We pray that you and your family have a blessed and beautiful Thanksgiving.
In His love, AJ, Joe, & Janna baby
How many blessings can you count?
Sleeping with her Duckie in the sweet sleeper Uncle Sammy & Aunt Cammie gave her – she has recently outgrown it : (
Hey Mama!
YAY! Cool Weather Is Here!
Wow, this leaf looks pretty good.
It IS good!
Just being cute.
Signing ‘Cereal’.
Signing ‘More’.
Getting ‘Muh’.
Eating ‘Muh’. She’s gonna turn into Kix Cereal I believe.
Sweet Breakfast Face.
Silly Breakfast Face.
Swinging and playing on a warm November Day. (Veteran’s Day 2006)
This leaf is ‘guh’ too!
Well, there’s Jack!
Hey Jackie Boy! I thought daddy gave you away since you’ve been playing Houdini so much lately.
(Electric fence is going up today as I type)
He’s a ‘guh’ boy!
Well, most of the time.
Oh my!
YUK!
I can’t believe he just licked me!
Okay, I’m going back for some more.
That’s it, I’m outta here!
Alright – I got away!
I just can’t decide if I want him to lick me or not!
Let’s go play in the leaves mama.
Loving my swing and ponies, November 17th!
Mitch & Max are getting really furry for the winter – they are preparing as if they were on the Shetland Islands (shhhhh, don’t tell them that NC can be pretty warm, even in Winter).
Max
Mitch
Swinging some more on November 18th.
SO HIGH!
This rope ain’t too bad either!
And yes, we have roses blooming in November – from the ‘gift that keeps on giving’ as daddy says. He gave this to mama last Valentine’s Day – ain’t they pretty?!
Janna signing ‘more’, as in she wants mama to push her swing some more!
Back to the leaves…
Outside is SO FUN, I think I’ll start to RUN! (We’re in trouble now)
Welcome to Holland
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.
By Emily Perl Kingsley
Tuesday, November 21, 2006
HAPPY THANKSGIVING!!!
I’ve finally made it back for an entry. There’s never enough time to keep you all updated.
Speech Therapy (ST) is paying off! We’re very proud of Janna’s progress. She has been learning a lot from ST and using what she’s learning at home. Well, last week she decided to perform at ST and finally showed off for her therapist. MeMa & PaPa said that Michelle (ST) about jumped through the roof when Janna said, ‘bubble’ and ‘pop’. She also signed two words together for Michelle – ‘more bubbles’. Obviously Mrs. Michelle is fun and has a lot of fun stuff and Janna really enjoys going to ST. She also uses a computer with a link pad with animals on it. When Janna presses on a certain animal on the pad, that animal will make its’ sound and walk across the computer screen. She recently barked like a dog for Mrs. Michelle too. I really need to sit down and calculate how many signs Janna has. Joe recently commented that she knows more sign language than he does – LOL. We have three of the ‘Signing Times’ DVDs and Janna has really learned a lot from these (so has mama and daddy). This has been so wonderful because she can communicate with us even though she doesn’t have command of her sweet little voice yet. And it is sweet. She’s recently been saying ‘more’ rather than signing it. It comes out more like ‘muh’ but it is so sweet. And this past week she has started saying ‘yes’, in it’s correct meaning. Her yes is more like a ‘yeah’ in a whisper and it’s so cute. She’s truly southern – LOL. We can ask her if she wants something or other and she’ll whisper, ‘yeah’. If she doesn’t want it, she says nothing – maybe a good thing that she isn’t saying ‘NO!’ yet, huh? Janna has been mouthing a lot of sounds and words but just hasn’t made the sounds that come with them. Her therapist says that this is a really good sign. In fact, she thinks that when Janna ever lets go, we won’t be able to keep her quiet. We are so thankful to God for this recent progress with words. She’s had ‘dada’, ‘mama’, and ‘umm guh’ (for umm good) down pat for awhile so we are so glad to hear a few more words lately. She’s always kinda said ‘WOW’ for Brother P (our retired Pastor) as he’s always said this to her when he sees her. Now she’s really saying it louder – thanks Brother P for the ST you’ve given but mainly for the example and Shepherd you have been and still are to our church family and community. Janna spits out a ‘MeMa’ & ‘PaPa’ at times and mouths ‘PaPa’ a lot. So we’re praying she’ll keep up the good work. Here are the signs that I can think of that she knows.
Signs that Janna uses regularly;
More
Milk
Cereal
Big
Cracker
All Done
Ball
Play
Swing
Daddy
Mama
G-pa
G-ma
Night Night
Bubble
Pop (Pop Corn)
Happy
Signs that Janna uses on occasion;
Shoes, Fish, Cow, Dirty, Bath, Elephant, Girl, Bird, Dog, Hot, Cold
Janna can point to ears, nose, eyes, tummy and she really likes the ‘Where is Thumpkin?’ song and starts wiggling her pointer finger when she wants us to sing it. She can do ‘Itsy Bitsy Spider’ motions and a few other motion songs. She doesn’t always get all the motions in during a song but she has put them all together at times. I can ask her to wiggle, wiggle and she’ll wiggle back and forth. She can find her ball, drum, or duck in a room full of toys and she will hand over any object to mama or daddy if she isn’t wanting to hang on to it too terribly for herself – LOL. She really likes imitating the kids on her videos that are singing and doing actions to various songs. I think back - it was so funny when she first started watching the ‘Signing Times’ videos, she would take her left arm and just sling it hard back and forth from her tummy to her back because she knew the people were using their arms/hands to make signs but she just couldn’t do it then. She was trying so hard though, slinging that arm. And even now a lot of her signs are approximations but they are her signs none the less. She has her very own sign for cereal. The true sign is to use your pointer finger, out stretched from a fist, to wipe across your chin (as if you are wiping milk off of your chin). She refuses to do this at her chin but rather does it to her other palm/wrist straight on. I’ll attach a picture below.
It may sound kinda silly to be writing about what Janna can do but I guess a lot of emphasis is put on milestones and such for a child who is differently-abled. We know she is sweet and tough little Janna no matter what she can or cannot do yet or no matter when she does what. We have high expectations and we also have one determined little angel. And we truly believe that God has heard and is answering the many prayers that have been lifted to Him on Janna’s behalf.
I’ve been meaning to post this story “Welcome to Holland”, for some time. It doesn’t completely apply to us as we were not planning on a baby/Janna or expecting her to be someone in particular. But for all those parents that did plan and dream for that new baby, this can really hit home. We’ve been living in Holland for nearly two years now, whether we planned on it or not. We sure are loving Holland – it’s the most beautiful place I know of on Earth.
In case you cannot open this link “Welcome to Holland” written by Emily Perl Kingsley, I’ll post the story below;
Welcome to Holland
Now, back to ‘Signing Times’. There’s a song at the end of one of these videos that goes something like this, ‘maybe we won’t find easy, but baby we found the good.’ We surely have been blessed by God with the ‘good’. No, it’s not easy to have a million doctor’s appointments during your child’s first year. It’s not easy to take shots and get blood drawn from a turnip named Janna. It’s not easy to watch your child fight to live or eat. It’s not easy to juggle work, family time, therapy, day care, and other appointments.
A BIG THANKS TO ME MA & PA PA, GRANDMA & GRANDPA, MA SUE, GRANNY & AUNT LINDA (for caring for our angel in her early, critical days), AUNT PAM and family, AUNT CARLA and family, AUNT SHEILA & UNCLE RODNEY from church, AUNT APRIL and family for helping us take care of Janna – she has the BEST grandparents, baby-sitters/day-care family in the world, AUNT GAYE (for scheduling appointments on Friday’s for Janna and getting us in the back door at the Peds and for picking up medicine for us ALL the time). We could never do it all without you. That’s how we get by – God provides support through wonderful family and friends like you.
AND THANKS TO ALL THOSE THAT HAVE PRAYED, SENT CARDS AND ENCOURAGEMENT, OFFERED A HELPING HAND MANY TIMES AND PLEASE FORGIVE ME IF I LEFT ANY NAMES OFF OF THE LIST ABOVE – I CANNOT POSSIBLY NAME EVERY ONE THAT HAS GIVEN AND MEANT SO MUCH TO US AND JANNA OVER THE LAST TWO YEARS.
Can you believe Janna will be two in February!?
The biggest THANKSGIVING goes to our Lord and Father, for watching out for us all, for surrounding and defending us everyday. His strength is like no other and we would be so lost without Him and His everlasting love.
1 Thessalonians 5:16-22 (NIV)
16 Be joyful always; 17 pray continually;
18 give thanks in all circumstances, for this is God's will for you in Christ Jesus.
19 Do not put out the Spirit's fire; 20 do not treat prophecies with contempt.
21 Test everything. Hold on to the good. 22 Avoid every kind of evil.
So, how do we hold on to the ‘good’? By always being joyful, by always praying, by always giving thanks - no matter what is happening. Why? Because this is what God wants us to do and who better knows what we need to do than the One who created us?! Keep the fire of God alive – don’t turn away from His Spirit. Grab a hold of the ‘good’ and steer clear of evil. There’s no other path like this one - walking WITH God.
We pray that you and your family have a blessed and beautiful Thanksgiving.
In His love, AJ, Joe, & Janna baby
How many blessing can you count?
Sleeping with her Duckie in the sweet sleeper Uncle Sammy & Aunt Cammie gave her – she has recently outgrown it : (
Hey Mama!
YAY! Cool Weather Is Here!
Wow, this leaf looks pretty good.
It IS good!
Just being cute.
Signing ‘Cereal’.
Signing ‘More’.
Getting ‘Muh’.
Eating ‘Muh’. She’s gonna turn into Kix Cereal I believe.
Sweet Breakfast Face.
Silly Breakfast Face.
Swinging and playing on a warm November Day. (Veteran’s Day 2006)
This leaf is ‘guh’ too!
Well, there’s Jack!
Hey Jackie Boy! I thought daddy gave you away since you’ve been playing Houdini so much lately.
(Electric fence is going up today as I type)
He’s a ‘guh’ boy!
Well, most of the time.
Oh my!
YUK!
I can’t believe he just licked me!
Okay, I’m going back for some more.
That’s it, I’m outta here!
Alright – I got away!
I just can’t decide if I want him to lick me or not!
Let’s go play in the leaves mama.
Loving my swing and ponies, November 17th!
Mitch & Max are getting really furry for the winter – they are preparing as if they were on the Shetland Islands (shhhhh, don’t tell them that NC can be pretty warm, even in Winter).
Max
Mitch
Swinging some more on November 18th.
SO HIGH!
This rope ain’t too bad either!
And yes, we have roses blooming in November – from the ‘gift that keeps on giving’ as daddy says. He gave this to mama last Valentine’s Day – ain’t they pretty?!
Janna signing ‘more’, as in she wants mama to push her swing some more!
Back to the leaves…
Outside is SO FUN, I think I’ll start to RUN! (We’re in trouble now)
Welcome to Holland
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.
By Emily Perl Kingsley
Sunday, October 29, 2006
Janna had a great time at her first Buddy Walk last Sunday. It drizzled rain but stopped just in time for the actual WALK. The weather didn't stop any of the fun. Grandma and Grandpa came to help Janna celebrate her first Buddy Walk. It was a real treat to meet Chris Burke (the actor ‘Corky’ from the past TV Series, Life Goes On). Thanks so much to everyone who sponsored Janna in her first Walk. Lots of pictures below.
Janna had a cardiology appointment a few weeks ago. Things are the same. Her valve leak is still pretty strong but she is growing and tolerating it well with medicine. We go back December eighth for another echo. She also got her first Synagis Shot for the season and a flu shot this past Friday. Since she is now closing in on 24 pounds, they had to split her Synagis into two injections. So, she got 3 shots in her little fat legs. She cried for about 30 seconds and got over it quickly, especially after getting her favorite snack (yogurt) right afterwards. She's still a picky eater but what she eats, she enjoys and eats well.
Janna is sleeping a bit more lately. Since she started walking we think it's tiring her down a little more. She is very busy during the day and is into everything. She's really keeping us on our toes and continues to brighten our days with her smiles. She's becoming a little girl right before our eyes and sometimes I have to ask, “Where did my baby go?” She’s showing more interest in books – she really gets into looking at the pictures and words and pointing and studying them. I told Joe just this weekend that she could never grow up slow enough. Yes, having Down syndrome delays her growth and development in many ways. And it will take her a little longer to do most things, but it’s actually a blessing to absorb it all as she makes her progress. It really helps us to be more grateful for all that God is doing in her life.
Having fun at her cardiology appointment; 
Enjoying the Fall and her dog, Jack.
All tired out from mommy’s company picnic – she won a duck!
THE BUDDY WALK in Raliegh, NC;
Janna and 'Wool E. Bull' - the Durham Bulls Mascot.
Trying to get Grandpa's hat.
Janna smiling for Grandma.
Me and Janna playing with Grandpa.
Whatcha looking mama? I'll help you find it.
Chris Burke and band acting silly.
Janna in her OVER-SIZED shirt wanting to get on stage.
Just a little excited about her first Buddy Walk.
Janna and 'Stormy', mascot for HOCKEYS' STANLEY CUP CHAMPIONS - The Carolina Hurricanes!
And we're off.
End of the Walk.
Chris, Grandpa, and Janna.
Chris, with some very encouraging words.
For those of you that watch the Raleigh News (WRAL), here's our very own, Linda Loveland (she was the Emcee for our Buddy Walk). I was very surprised to find that she is seven feet tall (not literally) but she does have her knees bent in the picture, has a deputy black belt in Tae Kwon Do, and grew up on a farm in MO. She looked nothing like she does on TV - LOL.
Janna smiling for Grandpa.
All tired out from the day.
The trolly back to the parking lot.
Thursday, October 5, 2006
Janna is participating in her first Buddy Walk this year. It will be held in Raleigh on October 22. If you would like to support her, please visit her fundraising page to find out more about the Buddy Walk. And even if you can’t support her, visit anyway to see her progress. The $ raised will help in many good ways, to ensure that others with Down syndrome are given the support and care needed to live, go to school, get therapies and other medical attention. It is for a very good cause.
If you didn’t notice, I added a video above of Janna walking. She’s not 100alking but she can go anywhere from 10-15 steps at a time. She finally figured out if she’d slow down that she could do it. She just wanted to run to start with.
Janna has a cardiology appointment tomorrow morning in Raleigh. Please pray that things go well. She is so determined and the Lord is blessing her so much with strength and health despite the leaky valve. I will update soon on the echo she will have tomorrow.
God bless you and as always, thanks so much for your encouragement, prayers, emails, and support. In His name, AJ
We were able to get away recently for a week. We all enjoyed a much needed vacation at the Outer Banks. MeMa & PaPa went too. Janna REALLY loved God’s great big ocean! She had no fear and enjoyed the water, sand, and wind. Here are some pictures.
Enjoying the sand – we couldn’t keep her from eating it – LOL.
She enjoyed the shells too!
Want one mommy? They’re good!
Excited about the next upcoming wave!
Our crab walker.
Having a ball!
She loved playing with and tearing down daddy’s sandcastles.
One that survived Janna.
The Coast Guard Plane flew over one day.
We went to visit the Hatteras Light House.
The beach really wore Janna out – she ate and slept so well on vacation – must be growing!
Here are some recent swing pictures of the good girl.
Grinning like a Opossum.
Just day dreaming…
See ya again soon.
Thursday, October 5, 2006
Janna is participating in her first Buddy Walk this year. It will be held in Raleigh on October 22. If you would like to support her, please visit her fundraising page to find out more about the Buddy Walk. And even if you can’t support her, visit anyway to see her progress. The $ raised will help in many good ways, to ensure that others with Down syndrome are given the support and care needed to live, go to school, get therapies and other medical attention. It is for a very good cause.
If you didn’t notice, I added a video above of Janna walking. She’s not 100% walking but she can go anywhere from 10-15 steps at a time. She finally figured out if she’d slow down that she could do it. She just wanted to run to start with.
Janna has a cardiology appointment tomorrow morning in Raleigh. Please pray that things go well. She is so determined and the Lord is blessing her so much with strength and health despite the leaky valve. I will update soon on the echo she will have tomorrow.
God bless you and as always, thanks so much for your encouragement, prayers, emails, and support. In His name, AJ
We were able to get away recently for a week. We all enjoyed a much needed vacation at the Outer Banks. MeMa & PaPa went too. Janna REALLY loved God’s great big ocean! She had no fear and enjoyed the water, sand, and wind. Here are some pictures.
Enjoying the sand – we couldn’t keep her from eating it – LOL.
She enjoyed the shells too!
Want one mommy? They’re good!
Excited about the next upcoming wave!
Our crab walker.
Having a ball!
She loved playing with and tearing down daddy’s sandcastles.
One that survived Janna.
The Coast Guard Plane flew over one day.
We went to visit the Hatteras Light House.
The beach really wore Janna out – she ate and slept so well on vacation – must be growing!
Here are some recent swing pictures of the good girl.
Grinning like a Opossum.
Just day dreaming…
See ya again soon.
Thursday, October 5, 2006 6:56 AM CDT
Janna is participating in her first Buddy Walk this year. It will be held in Raleigh on October 22. If you would like to support her, please visit her fundraising page to find out more about the Buddy Walk. And even if you can’t support her, visit anyway to see her progress. The $ raised will help in many good ways, to ensure that others with Down syndrome are given the support and care needed to live, go to school, get therapies and other medical attention. It is for a very good cause.
If you didn’t notice, I added a video above of Janna walking. She’s not 100 alking but she can go anywhere from 10-15 steps at a time. She finally figured out if she’d slow down that she could do it. She just wanted to run to start with.
Janna has a cardiology appointment tomorrow morning in Raleigh. Please pray that things go well. She is so determined and the Lord is blessing her so much with strength and health despite the leaky valve. I will update soon on the echo she will have tomorrow.
God bless you and as always, thanks so much for your encouragement, prayers, emails, and support. In His name, AJ
We were able to get away recently for a week. We all enjoyed a much needed vacation at the Outer Banks. MeMa & PaPa went too. Janna REALLY loved God’s great big ocean! She had no fear and enjoyed the water, sand, and wind. Here are some pictures.
Enjoying the sand – we couldn’t keep her from eating it – LOL.
She enjoyed the shells too!
Want one mommy? They’re good!
Excited about the next upcoming wave!
Our crab walker.
Having a ball!
She loved playing with and tearing down daddy’s sandcastles.
One that survived Janna.
The Coast Guard Plane flew over one day.
We went to visit the Hatteras Light House.
The beach really wore Janna out – she ate and slept so well on vacation – must be growing!
Here are some recent swing pictures of the good girl.
Grinning like a Opossum.
Just day dreaming…
See ya again soon.
Wednesday, August 16, 2006
HAPPY BIRTHDAY TODAY GREAT GRANDMA DARTHA!
I LOVE YOU, Janna
Sorry it’s been awhile since the last update but boy are we having a busy Summer! Janna is having fun playing in her kiddie pool (and crawling out of it), swinging, going to birthday parties and family reunions, and playing with Jack (dog) and her ponies, when it’s not too hot.
Results from Swallow Study;
Janna does have a delay in her swallow of water/thin liquids. The x-ray showed diluted formula nearly touching her vocal chords before she swallowed. She could aspirate water if she tired while drinking. We will have to thicken water/thin liquids for her. But for now, she is still on formula, which is half water, so they are not concerned about her not drinking water yet. If and when we start straight water, we will use a powder called ‘Thick-It’ to make it about as thick as her formula. She doesn’t care for juices yet, so for now, Janna drinks only formula.
Results from Hematologist visit at Duke;
Janna’s Hemoglobin was 10.5 last week – YAY – Praise the Lord!!! It’s creeping back up. The doctor suspects that because of the 2 heart surgeries that it is just taking awhile for her blood to build back up. Again, it was a horrible time getting a vein as I held her tight and daddy prayed. Finally after digging in two different areas, the guy got a vein in her wrist but it didn’t want to flow too well. Eventually all the tubes were filled and the screaming and snubbing subsided. Other than that, Janna was all smiles and showed off for the nurses, doctors, and other patients during this 3-hour visit. Although a hemoglobin result of 10.5 is a little low, it definitely doesn’t require Janna to get a transfusion so this is great news. A quick look under the microscope showed that her platelets and cells look great. They do not expect anything unusual but will call us once all the test results from her blood work are in.
Janna had her 18-month Pediatric visit last Friday. She got 2 shots and a farewell for 6 months – YAY! She weighs 22 lbs. and is 30 inches tall. Her head is finally growing some too. It was about 44 cm around.
Janna started Speech Therapy Tuesday of this week. MeMa & PaPa took her to this preliminary appointment and said she did great. She warmed up to her therapist very quickly and was quite cooperative and happy. She continues to have Play Therapy on Fridays and is working well with Mrs. Laura. She has recently started standing alone for longer seconds at the time. It's a game for her to pull up on the couch and then let go, raising her hands to stand alone for as long as she can and then plop down or grab the couch again. She does it over and over as we cheer and clap her on. She doesn’t really like walking anymore with us holding her hands – she rather do her bear walk to travel about. So for now she’s our little bear and we know she’ll walk soon enough.
Thanks for checking in on our angel. And thanks so much for your prayers. We are very thankful for the recent test results and for Janna’s overall health. She is eating well, getting more and more active and loving life. Please sign the guestbook so we know that you were here. Enjoy some more Summer pictures below.
Janna showing us that she is ‘SO BIG’.
Enjoying the pool at her cousin Hunter’s birthday party.
Hey, somebody help me! My swing stopped!
Having a big time splashing and playing in my pool!
Giving Jack my toys – she really loves him!
Thinking about escaping…
She escapes her pool wearing a 7 lb. Diaper – LOL!
She’s gone! (I figured the extra diaper weight would build up her muscles.)
And Jack’s enjoying the water.
Jack, come here boy!
Good kisses!
A swing smile.
We visited Mrs. Darlene at her beach house in Harker’s Island to celebrate her birthday and graduation from school. I had a big time playing in the sand and water.
Our little crab walker.
I really enjoyed eating the sand!
My Aunt Elizabeth and Uncle Bryan took a vacation in Hawaii when Uncle Bryan returned from Iraq. They sent me this beautiful Hawaiian Sun Dress. Don’t I look pretty in it!?
Loving on my ponies. Me and Max.
Me and Mitch and cheering for Mitch.
This Summer is wearing me out! Until next time…Night Night.
Tuesday, July 18, 2006
Janna had her Speech Evaluation on Monday, July 3rd. She decided to ‘talk’/make sounds this day so the evaluator put her in the 10 month range and recommends Speech Therapy (ST) every other week. We are on several waiting lists and will probably have to start out with private ST and then hopefully get in with the State Services once they have an opening.
Janna also started Play Therapy a couple of weeks ago. At first I thought, ‘What in the world is Play Therapy?” I think she gets enough of that from us and others in the family. But, the Play Therapist is a really good thing! She works so well with Janna and is using our Home Program that the PT gave us to help Janna with some of her physical development. She had Janna cruising at the couch in 5 minutes. Not that she’s running up and down the couch but she will move and side step to get to an object she wants. She does this well in her crib where she has rails to hold onto, but she has not been cruising at the couch much at all. Janna also did some pointing for Mrs. Laura, using her index finger versus her thumb or whole hand. She has always been a big thumb pointer/toucher. It was explained to me that some kids use their thumbs to feel because the thumbs are stronger than the fingers. Some of the things she is working on with Janna are; stacking rings, rolling a ball, pointing to objects in a book, picking up puzzle pieces (that have knobs) and placing them back where they belong and many other things.
We visited the Cardiologist last Friday and had an echo done. Janna’s valve leak is no worse than last time. The Mitral Valve leak is considered moderate to severe and the Tricuspid side of the valve has a mild leak. But her heart function is great. He increased her blood pressure medicine and is leaving her on the small doses of diuretics – still wanting her to out grow them. And growing she is – she weighed 21 pounds that day. He is concerned about her Anemia and suggests that the Hematologist give her some blood. My brother or I should be able to give her blood. Being Anemic is not doing her heart any favors and Dr. Milazzo thinks that giving her some blood would be good for her. He will be in contact with the Hematologist we are scheduled to see on August 8th. They will be pulling a lot of blood to study, trying to figure out why she continues to be Anemic and also to check her Electrolytes. The Hematologist says that the study of her past blood-work does not point to iron-deficiency so they will try to determine what is causing the Anemia.
Janna is doing well and enjoying the Summer. She really has fun in her little pool and is also having fun staying with Aunt Carla and her cousins, Tara and Caroline, a couple days a week. She walks like a bear on all fours ALL the time now. She has left crawling behind. She can also walk fairly well behind her walk-behind walker. Sometimes she ends up under it but she keeps her grip and hangs, never falling – it’s so funny. She does have 2 more molars trying to come through and they have been aggravating her some but overall she’s handling it well. Of course Jack (dog) and her ponies always make her smile. She’s eating and sleeping well and we are having a ball watching her grow up.
We are waiting on a phone call from Wake Med. Janna will be having a Swallow Study done soon. She still gets strangled on water or thin liquids. She also gags easily but not nearly as bad as she used to. Her reflux has worsened over the last few weeks but we figure that may be from walking like a bear all the time. The study will determine if she’s aspirating any and if she may need something to thicken thin liquids. The Speech Evaluator suggested this study be done for Janna and also her cardiologist recommended it when we told him about the recent reflux issues. So he referred us to Wake Med for this.
Please help us pray for good results from the upcoming blood work and this Swallow Study. We are so thankful and give God all the praise for keeping Janna’s heart healthy and strong.
Thanks for checking in on our angel. God bless you, AJ
Recent Pictures
Janna had some SERIOUS bed head after daddy put her to bed with her hair wet one night.
Yes, I actually do have TOP teeth – you just rarely see them.
Mmmmm, this pool water is good momma!
Janna, starting to show us that she is ‘SO BIG’.
I’ll have to try and catch a picture of her really stretched up high with her head leaning back too.
About to dive out onto the deck and scare momma.
The Happy Girl playing.
Oh momma, I don’t wanna wear these!
Glasses are made for eating……
and so are Fishes……
and my Strawberry Shortcake Ball. (and everything else when she’s teething)
Smiling big for my daddy on a day he stayed home with me.
Come back soon to check on me and I’m sure mommy will add some more smiles.
Monday, June 26, 2006
HAPPY SUPER LATE 1st BIRTHDAY BABY GIRL! Mama and daddy love you!
Janna finally got her BIG surprise! Ponies! A BIG thanks to her daddy, Uncle Sammy, Uncle Andy and Uncle Daniel (daddy’s good friend) for all the hard work of getting a fence put up around the pasture. Daddy (Joe) worked really hard remodeling the shelter/barn for the ponies too. These aren’t just regular ponies. They are UK-type Shetlands, specifically bred here in the US for kids with special needs. You can read all about this wonderful organization that provides ponies for kids, free of charge, for as long as they want them, benefit from them, fit their lifestyle.
Here’s the link; Personal Ponies Ltd.
So, on June 17th, we had a small family, BELATED by far, 1st Birthday Party for Janna. As you may recall, her actual 1st birthday party was postponed back in February due to surgery. The weekend before the party, Joe, my brother Andy, and myself rented a horse trailer and drove to PA to get the ponies. We tried several routes first, but things just weren’t working out so we decided to go get the ponies ourselves. Janna will greatly benefit from these ponies. They will be good therapy for her in more ways than one.
The trip to PA was quite interesting. We had our first setback when we picked up the rental trailer. The guy that hooked the trailer up for us didn’t ground a certain wire and so we blew a fuse immediately and only had one tail light/signal light working on the trailer. So, off to Tractor Supply to make sure we had all the right connections (adapter) from the vehicle to the trailer. The guy assures us we have the right stuff. So, on to an auto store where we found a blown fuse and replaced it, and blew it again and replaced it again and replaced a flasher that didn’t need replacing and returned it and so on and so on. Uncle Ray (my mama’s brother that lives in the area we were in), came out to give us a hand with his mechanical mind. He grounded the wire and got us in the right direction. THANKS UNCLE RAY! We set out for PA, still not fully set with lights and blinkers but safely enough. We used hand signals for Left-hand turns so as not to blow another fuse, although we had some extra on hand. At least we had full brake/tail lights. We lost a good bit of time and debated if we should go on. We all decided to go for it. We had an uneventful ride after that through the beautiful mountains of VA and WVA and arrived at our destination around 8:30/9pm just as it was getting dark. We are loading the ponies, Mitch and Max, and Mitch gets free from his former owner and heads out of the huge arena door around to the pasture to eat – he loves to eat! We call him ‘Fatty Bread’. So, my brother and I are dashing and running around in a pasture after 9pm under the PA moon trying to coax Mitch to come to us. The owner gets Andy a bucket with some grain and as soon as Mitch hears that sound he’s trotting to him. Understand, the owner is disabled and cannot run about well and Joe has never been around horses much so he wasn’t about to head out there. There were other big horses in the area as well. We had a large pony growing up and Andy has had horses and currently has a large pony and I was mainly acting like I knew what I was doing out there trying to round Mitch up. I knew we didn’t need to waste any more time as we were doing this trip around the clock. Finally we have them loaded and get a bit tangled up as we try to find the 24-hour Wal-Mart they told us about. We finally find it and it’s cold in PA at night, even in June! We purchase a set of Emergency Lights to attach to the horse trailer and Joe attaches many strips of reflective tape to it as well. We left Washington, PA around midnight. THANK YOU UNCLE ANDY FOR DOING THE MAJORITY OF THE DRIVING!!! It was so hard to stay awake. After dodging many deer through WVA, we stopped around 4am for a power nap. Once the sun rose it was easier to stay alert. We reach home around 11:30am Sunday. A big thanks to MeMa and PaPa for staying with Janna while we were gone. We were so glad to be home and to have the ponies safe and sound. It took them a little while to adjust – it was a hard trip for them too. But by Monday they were acting like they were at home. They have really settled in now and are taking the NC heat well too. They love grazing the pasture and scratching their backs on the Cypress trees. Janna enjoys seeing them and she even rode Mitch a little at her birthday party. Mitch is around 15 years old, very gentle and knows how to act. Max is a spunky 4-year old who is learning to mind his manners. He’s very sweet at times too. They are both friendly and we are learning so much about ponies and enjoying them. Aunt Carla and Uncle Andy are helping us learn so much about caring for them. I even let Max nibble on Janna’s toes the other day. She laughs and smiles when she sees her ponies. So far, Jack (her dog) gets the biggest smiles and laughs though.
Aunt Cammie made Janna a very special scrapbook/photo album for her birthday. It’s awesome and we all love looking at it. Thanks Aunt Cammie and Uncle Sammy! You can get a glimpse of it in the birthday pictures below.
I mentioned in the last journal entry that Janna’s Hemaglobin # continues to be low; she’s anemic. I heard today from a Duke Hematologist and after looking at all of Janna’s last blood work, she does not believe it’s because of low iron. We will be taking Janna back to Duke the first part of August for them to draw more blood – fun, fun! They want to do some more tests and study her blood/blood cells to try and figure out why she is anemic. Her Pediatrician did have a stool sample tested last week and it was negative for blood, so we know she is not losing blood that way. The Hematologist mentioned that sometimes in cardiac patients, the blood from the heart will do some ‘blending’. I’m not sure I understand this completely yet but it may be the cause for her anemia. We are glad that we do not have to give her any iron supplements. She is still on formula, baby cereals, and vitamins with extra iron because of this. We are praying that they soon figure out why she is anemic. She will visit her cardiologist in a couple of weeks and they will also look closely at her mitral valve leak to make sure it has not worsened.
But the good girl is all over the place, shows no lack of energy and is happy as ever. You would not know she is anemic or that she had heart surgery 4 months ago. If her valve is leaking, she’s thriving well above it. She’s still a yogurt-eating machine and is happily trying more table foods all the time. She likes baked beans, fig newtons, whole garden peas, and mashed-potatoes. We’re still working on the meats. She likes them best mixed with vegetables. Her favorite foods, besides yogurt of course, are Kix Cereal, Pop Corn, and Oatmeal.
Janna is scheduled for a Speech Evaluation on July 3rd. Hopefully she will be able to start receiving Speech Therapy soon after this. She is scheduled to start Play Therapy this Friday, June 30th.
I will update soon to let you know about her July 14th cardiology appointment. God bless you all, AJ
Pictures from the ‘fake’ Birthday Party – June 17th, 2006
Time to open presents Janna.
Hummm…It’s a picture of me and mommy.
I love this paper!
Thanks Grandma for helping me open my presents.
Big kisses for grandma! 
Cake Time!
Janna didn’t enjoy the cake – but she loved the singing!
Patting Grandpa’s hand and really studying his words.
Meet my ponies!
Mitch and Max eating grass.
Mitch and Max – buddies!
Pretty Boy Mitch
Spunky Little Max
Freckles, my cousin Tara’s pony, is staying with my ponies for a short time while my Uncle Andy and his family move. Mitch thinks he has a girlfriend now. 
Freckles and Max
Freckles is a pretty girl!
My first cousins riding the old, second generation golf-cart at my party.
Left to right; Tara, Caroline, Cameron, & Summer
Jackie Boy – the good dog.
Lovin’ my PaPa
Mitch let me go for a ride at my party – he’s a good pony!
Whoa…cowgirl!
I love rubbing his mane!
I wanna eat some grass too, like my ponies.
This was such a fun day!
A gummy smile from the past – just because.
Thursday, June 8, 2006
Janna visited the Down syndrome Clinic at Duke last week. She weighed about the same as she weighed a few weeks before, according to their scale; 19 lbs. and 14 ozs. Since she started crawling she’s probably not gaining as fast. She was 29 inches tall and she still has a peanut head. Dr. Worley was very pleased with her growth and overall health. It was a lengthy 2-hour appointment but she cooperated well, other than for the blood pressure cuff. She cannot stand it when they put it on her arm – most use her leg. Needless to say, once again, they didn’t get a reading. It’s rare anyone gets a blood pressure reading on her. Janna was really brave for the blood drawing, although she fought and cried while I held her. This was probably the second best stick she’s ever had. Daddy had to turn his head. While the lady was filling SEVEN tubes of blood, Janna settled to snubs and then crashed as I buckled her into the car seat.
Yesterday, Janna had an evaluation by the CDSA (Children’s Developmental Service Agency) of Greenville. Joe took her for this in Goldsboro as they have a Travel Clinic. Her strengths were; Learning Skills and Self-help Skills. Areas to work on; Language and Motor Skills (Gross & Fine Motor). Here are the ranges she fell in for various areas;
Developmental Area/Functioning Level
Congnitive Skills/13 months
Language Skills/8.5 months
Fine Motor Skills/11.5-13 months
Gross Motor Skills/10 months +
Adaptive Behavior Skills (Self-help)/10-13 months
Social/Emotional Skills/8-13 months
We are so proud of Janna’s accomplishments, especially considering that she was fighting to survive her first 4 months of life and has also endured 2 heart surgeries. The Lord is truly blessing her development.
She’s not very far behind and again as I’ve written before, she’ll do things, she will accomplish, it just may take her a little longer than most.
It was determined from the evaluation that Janna now qualifies for Speech Therapy (ST). It may take awhile to all be sorted out but she will soon start receiving ST. None participating in the evaluation felt that she needed Physical Therapy (PT) at this time.
I mentioned recently that Janna is to receive a very special surprise/gift. Well, it won’t be long. The surprise should be here soon – in less than 10 days. I will be posting all about it in the next journal entry.
I’ll end with a scripture that many of you know. We are so thankful that the Lord is continuously restoring health to Janna and blessing her beyond measure. We are also thankful for all of the support that so many of you give our family. Your prayers mean so much to us and we appreciate you caring enough to take the time to pray for Janna and encourage us along this wonderful journey.
“But I will restore you to health and heal your wounds, declares the LORD.”
Jeremiah 30:17 NIV
His promises are TRUE! In His love, aj
Pictures of our Blessed Girl! Sunday, June 4, 2006
Just a little excited!
Ta Da!
Now you’re talking – I get to play in the grass!
Showing off my chubby arms.
And BIG SMILES for daddy!
Bubble Time!
Janna, Please don’t eat the tub.
But Momma, it’s GOOD!
Okay, I’ll go on to other things like the hair washing brush.
It’s even better tasting than the tub.
Hey Momma – Watch out – I’m driving through.
Beep, Beep!
Swing Pictures from Memorial Day
This is FUN, FUN, FUN!
Tuesday, May 16, 2006
Janna and I had a busy day last Friday. She had her 15-month Well-Baby Check-up with Dr. Tayloe at 9 am and also had a Cardiology appointment at 1pm. She’s closing in on 20 pounds!!! She weighed 19lbs. and 12 ozs. and was somewhere around 29 inches tall – she’s never still for this measurement so I don’t know how acurrate it is. She got a vaccination in her arm – the first time they ever did that! And she let us all know how bad it hurt. And as bad as I hated to do it, I asked that her hemoglobin be checked because it was really low prior to her last surgery. A couple months before surgery, Janna’s hemoglobin was 11.5. Just prior to surgery it was down to 8 and her hematocrit was at 24 Her hemoglobin and hematocrit are still low at 10 and 29but neither doctor is overly concerned about this. I tend to be borderline Anemic myself and several others on my momma’s side of the family, so for now we won’t fret over these numbers.
Hemoglobin should be in this range;
Male: 13.8 to 17.2 gm/dl
Female: 12.1 to 15.1 gm/dl
Hematocrit should be in this range;
One (1) year of age: 29-41
We just have to keep pushing the iron, which we are doing in cereals, formula, and vitamins. We can start weaning her off the formula as she transitions to a cup. But the formula provides iron and so many other good things. So this may be a slow process. The doctor suggested that we NOT put whole milk in her bottle but use a cup for drinking milk. We don’t anticipate any problems with whole milk since she already eats so much yogurt. She’s getting well over her recommended dairy foods from her formula and yogurt daily. She eats well too, but has some trouble with solids. She gets gagged/choked easily sometimes and doesn’t like to eat certain textures. But we’re thankful that she eats some things well and is growing wonderfully.
At the Cardiologist Office, Janna hardly even whimpered, although she was uncertain of Dr. Milazzo. She did well during the echo and smiled for most everyone there and of course she had a ball playing with the paper. Her leak is still present but as Dr. Milazzo put it, ‘She’s tolerating it well.’ He increased her Enalapril (blood pressure med) and is keeping her on the diuretics for awhile longer. He wants her to out grow them naturally. And the best news we got; we return in 2 months instead of 1. We can’t wait for the day he says, ‘See ya in 3 months or 6 months.’ But we’ll be patient and wait our turn for that.
What a wonderful Mother’s Day gift I received! Janna has been worming around and pivoting about using her sitting position, doing some army crawling and even trying to bear walk. But Sunday, she decided to crawl - the typical 4 point crawl, except she uses 3 points and sticks one leg out to the side (just like I used to do, mama says). She’s all over now and much faster, so we have to be on the ball to keep up with her. She showed off some at Grandma and Grandpa’s and really got with it when she got home Sunday evening. She got to daddy’s spotlight by the door, among other things. It’s definitely time to Baby Proof the house! Many do not realize that baby’s with Down syndrome are delayed when it comes to reaching milestones. Throw in 2 heart surgeries and that makes it even harder to develop. But we are very pleased with Janna’s development and know the Lord has truly blessed her in many ways. She tries so hard sometimes to do things and when she gets there – what an accomplishment! Many of you know that she has been wanting/trying to walk for quite some time. We hold her hands and help her walk all over the house. She wants to do this ALL the time. And MeMa makes sure Janna gets plenty of walking time in when her and PaPa keep Janna. She hasn’t got brave enough to let go of our hands yet. It may take her awhile to walk and talk and do other things, but she will get there – she has a lot of determination and a lot of support. We’re so proud of how far she’s come.
God's Rainbow
Rainbows appear after mighty storms,
When things look their very worst,
Just when the skies are darkest gray,
Look for the rainbow first.
The rainbow is a sign of God's promise,
That He will guide us through any storm,
That He will see us through all our troubles,
No matter what their form.
When you feel battered by life's storms,
And you are filled with doubt and dismay;
Just remember God's rainbow is coming
It's only a prayer away.
~ Author Unknown ~
As we were driving home from Grandma’s on Mother’s Day, we saw the coolest rainbow – the kind where you can see both ends going into the land. Joe starts telling Janna to look and all about how this is a promise from God. I doubt she had a clue on what he was talking about but it really put a smile on my face. Our pastor had just discussed in the morning sermon (out of II Timothy) the importance of teaching your kids about God’s Word and love from the get go. And this was an example of it happening right before my eyes and the neat thing was, Joe didn’t even hear the sermon – he had to take Miss Wiggle Worm out of church fairly early as she wanted to talk and play.
As soon as we got home, Joe took these pictures of the rainbow. The clouds had moved and were now covering most of it.
Never forget, God’s promises are TRUE and EVERLASTING. In His name, AJ
And some recent pictures of the good girl;
I LOVE MY SWING!
I really do.
DO YOU BELIEVE ME?
I also wanted to update you on Mr. Colton since his heart surgery. He is getting along real well. He’s starting to eat some better, but please continue to pray that he will eat more and gain weight. Here are a couple of recent pictures of this sweet angel; 
Mr. Blue Eyes wearing a bandana in honor of Janna.
Breakfast with daddy……
Do you think she loves him?!
YAY! I have fun staying with daddy. 
Look at that baby in there momma!
Do you see her?
I’m gonna give her a kiss!
Janna has learned how to scoot around backwards in the bathtub while sitting.
We call it the Butt Scoot Boogie!
Enjoying a Sunday afternoon outside.
CHEESE……
Showing off at Grandma and Grandpa’s in my Red Sox shirt daddy got me.
Doing some tumbling and tricks at home.
We hope that Janna might be musically inclined but we surely didn’t know she would be able to do this already – LOL!
Momma, please don’t tickle me anymore, please!
Tuesday, April 25, 2006
HAPPY BIRTHDAY AUNT CHANDA!!! I hope you have a wonderful day! Love, Janna
We all had a wonderful Easter and Janna is continuing to get along well. She is so exciting to watch – she just has so much more energy since this last surgery. We continue to give all the thanks and praise to God who has brought her so far!
Joe recently had a cardiology check-up (April 18th). His heart sounded so good they didn’t even do an echo. Maybe they will do one at the next 6-month check-up so we can see how his heart has gone back down, more to normal size. Just a few more weeks of school left. Joe has been going to school every Monday and Wednesday night since January. This is for another certification at work. He will be taking the final test in June. He’s worked really hard for this. Please pray he does well on the test.
Janna weighed in at 18 lbs. and 12 ozs. last week (April 21st). We went for her last Synagis Shot of the season. She cried about 5 seconds and then smiled for Brandy – the nurse who gave it to her. I guess she’s getting tougher and tougher when it comes to sticks.
She had a fun time going to an Easter Egg Hunt with Aunt Pam, Summer and Cameron at their church the Saturday before Easter. Mommy and daddy needed some time to get out and get some special things done for Janna since daddy finally got a weekend off of work. She will be getting a big surprise soon and I’ll tell you all about it as we get closer to that time. Daddy has really been working hard to get things ready for the new surprise she will be given. Janna also enjoyed the egg hunt at Grandma & Grandpa Best’ house Easter Sunday. All the kids had a big time even though it was 90 degrees – whew! Uncle Sammy and Aunt Cammie came to visit recently and brought Janna a nice Easter Basket – pictures of her getting into it below. Uncle Sammy also helped daddy put up an outside light and has also been a big help with preparing for Janna’s soon coming surprise.
This poem was written by a young boy after seeing an Easter musical and hearing his Pastor's Easter message.
Easter's True Meaning
By Matthew Muir, age 12
On a cold dark day inside Christ's heart,
Our sins caused the nails right from the start.
The fault was all ours on that old rugged cross,
That's why the Father came to accept such a loss.
The last three words before he was diminished,
Was simply to God, "It is finished".
For three days straight guards stood by the grave,
Unprepared for what was going on in the cave.
On the third and last day, nobody wanted to stay.
Suddenly they felt a short scary rumble,
As the guards began to stumble.
Then the rock sealing the cave rolled away,
As the guards couldn't stand it and ran astray.
Mary, disciples and other faithful followers came,
To see the Lord had risen with not a bit of shame.
Now it's your decision to be Christian or not,
But I strongly suggest you give it a shot.
So when the day comes for our arrival,
You'll be one of us with a successful survival.
Let’s NEVER forget that the stone rolled away, revealing our RISEN Savior.
He is STILL ALIVE and WELL!!!
Pictures of Janna’s haircut – her bangs were just too aggravating!
So I cut them as best she would let me – they are so uneven – LOL.
But she can still wear a whale spout up top!
Enjoying the swing and the Spring.
CHIP MUNK SMILE!
YAY! We’re ready to leave for the Egg Hunt with Aunt Pam, Summer, and Cameron!
All the cousin’s at Grandma’s Egg Hunt – there really are a few more boys, but they couldn’t make it. From left to right; Taylor holding Janna, Standing – Hayleigh, Nora, Tara, Caroline. Squatting; Kendall and Hannah. And the lone boy, Hunter (NEEDING A HAIR CUT – just kidding buddy – you’re COOL!)
Enjoying the AC at Grandma’s after the Egg Hunt.
Determined to get to her Easter Basket Uncle Sammy & Aunt Cammie brought her.
You know she loved the PAPER!
And she loves the doll too!
Very pleased with her accomplishment!
Easter Sunday pictures after church. (Thank you Kelsey Tart for all the beautiful hand-me-down dresses!)
So they sit me here with all this pretty stuff and expect me NOT to touch it?
I just don’t understand!?
Oh well, I guess I’ll smile for them anyway…
…and even wear the bonnet for a few seconds.
Smiley Girl!
Silly Girl!
Oh Momma – it’s too hot out here – can’t we go inside now?!
Tuesday, April 25, 2006
HAPPY BIRTHDAY AUNT CHANDA!!! I hope you have a wonderful day! Love, Janna
We all had a wonderful Easter and Janna is continuing to get along well. She is so exciting to watch – she just has so much more energy since this last surgery. We continue to give all the thanks and praise to God who has brought her so far!
Joe recently had a cardiology check-up (April 18th). His heart sounded so good they didn’t even do an echo. Maybe they will do one at the next 6-month check-up so we can see how his heart has gone back down, more to normal size. Just a few more weeks of school left. Joe has been going to school every Monday and Wednesday night since January. This is for another certification at work. He will be taking the final test in June. He’s worked really hard for this. Please pray he does well on the test.
Janna weighed in at 18 lbs. and 12 ozs. last week (April 21st). We went for her last Synagis Shot of the season. She cried about 5 seconds and then smiled for Brandy – the nurse who gave it to her. I guess she’s getting tougher and tougher when it comes to sticks.
She had a fun time going to an Easter Egg Hunt with Aunt Pam, Summer and Cameron at their church the Saturday before Easter. Mommy and daddy needed some time to get out and get some special things done for Janna since daddy finally got a weekend off of work. She will be getting a big surprise soon and I’ll tell you all about it as we get closer to that time. Daddy has really been working hard to get things ready for the new surprise she will be given. Janna also enjoyed the egg hunt at Grandma & Grandpa Best’ house Easter Sunday. All the kids had a big time even though it was 90 degrees – whew! Uncle Sammy and Aunt Cammie came to visit recently and brought Janna a nice Easter Basket – pictures of her getting into it below. Uncle Sammy also helped daddy put up an outside light and has also been a big help with preparing for Janna’s soon coming surprise.
This poem was written by a young boy after seeing an Easter musical and hearing his Pastor's Easter message.
Easter's True Meaning
By Matthew Muir, age 12
On a cold dark day inside Christ's heart,
Our sins caused the nails right from the start.
The fault was all ours on that old rugged cross,
That's why the Father came to accept such a loss.
The last three words before he was diminished,
Was simply to God, "It is finished".
For three days straight guards stood by the grave,
Unprepared for what was going on in the cave.
On the third and last day, nobody wanted to stay.
Suddenly they felt a short scary rumble,
As the guards began to stumble.
Then the rock sealing the cave rolled away,
As the guards couldn't stand it and ran astray.
Mary, disciples and other faithful followers came,
To see the Lord had risen with not a bit of shame.
Now it's your decision to be Christian or not,
But I strongly suggest you give it a shot.
So when the day comes for our arrival,
You'll be one of us with a successful survival.
Let’s NEVER forget that the stone rolled away, revealing our RISEN Savior.
He is STILL ALIVE and WELL!!!
Pictures of Janna’s haircut – her bangs were just too aggravating!
So I cut them as best she would let me – they are so uneven – LOL.
But she can still wear a whale spout up top!
Enjoying the swing and the Spring.
CHIP MUNK SMILE!
YAY! We’re ready to leave for the Egg Hunt with Aunt Pam, Summer, and Cameron!
All the cousin’s at Grandma’s Egg Hunt – there really are a few more boys, but they couldn’t make it. From left to right; Taylor holding Janna, Standing – Hayleigh, Nora, Tara, Caroline. Squatting; Kendall and Hannah. And the lone boy, Hunter (NEEDING A HAIR CUT – just kidding buddy – you’re COOL!)
Enjoying the AC at Grandma’s after the Egg Hunt.
Determined to get to her Easter Basket Uncle Sammy & Aunt Cammie brought her.
You know she loved the PAPER!
And she loves the doll too!
Very pleased with her accomplishment!
Easter Sunday pictures after church. (Thank you Kelsey Tart for all the beautiful hand-me-down dresses!)
So they sit me here with all this pretty stuff and expect me NOT to touch it?
I just don’t understand!?
Oh well, I guess I’ll smile for them anyway…
…and even wear the bonnet for a few seconds.
Smiley Girl!
Silly Girl!
Oh Momma – it’s too hot out here – can’t we go inside now?!
Tuesday, April 11, 2006
Janna had her first echo since surgery last Friday. Things are good! Her cardiologist says that the small leak is still just that – small – the same as it was immediately after surgery. He wants her to outgrow the diuretics instead of just taking her off cold turkey, so maybe she can come off those at next month’s appointment on May 12th. She will be on the Enalapril (Blood Pressure Medicine) for life.
She weighed in at EIGHTEEN POUNDS & NINE OUNCES!!! She gained about a pound since we were there last. And she was almost 28 inches tall. Dr. Milazzo is very pleased with Janna’s growth, recovery, etc. She has had A LOT of energy the last couple weeks also. And she’s eating well since her top two teeth cut through. While she was cutting them, she didn’t want to eat much of anything, but YOGURT! Her favorite!
This past Saturday Janna got to go to a Family Reunion/Pig Pickin’/Anniversary in Clinton. Many were there that hadn’t seen her since she was very young and many got to see her for the first time, as you know we haven’t taken her out of the house much with all the heart issues. She had a fun time and was all smiles. I’ll include a picture of all the kids below. And for the first time ever, she stayed awake until 10pm! There was just too much going on for her to shut those eyes. It caught up with her the next day though and she took some long naps. It was so good to see some of our family that we don’t often see and to fellowship and eat some GREAT food! The dessert table was outstanding! Of course Janna had squash, yogurt, and milk. She’s starting to eat more table food, but hasn’t quite made the full transition. I didn’t think BBQ would be a good start - LOL. Thanks to Denise and Larry for hosting the Reunion and all the others in Clinton that helped provide such a wonderful time. We also celebrated Uncle Stacy and Aunt Lib’s 61st Wedding Anniversary! Uncle Stacy is Janna’s Great-Grandmama Macie’s baby brother. Janna was named after Macie (middle name). Janna also loved sitting with and loving on her Great Aunt Gracie, who is Macie’s twin sister. She will be 91 this summer. You can see her sitting in the back of the kids’ picture below.
Once again, we cannot thank the Lord enough for blessing our baby girl with a good cardiology report and weight gain and health! We give Him all the praise for this! And thanks to everyone that prays for our angel!
Now for some smiles……
I didn’t say you could take my picture, Momma!
PEEK-A-BOO!
Really enjoying some Baby Einstein……
Ooooooooooo
Momma, can’t you see I’m busy.
Back to my show……and yes I cut her banes last night – I couldn’t take it any longer!
Playing with my cups Aunt Carla gave to me.
More Dental Care in my UNC shirt Aunt Chanda & Uncle Curtis gave me for Chirstmas.
All the kids at the West Reunion this past Saturday (April 8th, 2006)
Janna and cousin Colby already had their jammies on at this point – just in case LOL!
Wagon Smiles also from this past weekend.
Weeeeeeee……this IS FUN!!!
Had to make a FUNNY FACE picture!
I see you over there daddy!
Tuesday, April 11, 2006
Janna had her first echo since surgery last Friday. Things are good! Her cardiologist says that the small leak is still just that – small – the same as it was immediately after surgery. He wants her to outgrow the diuretics instead of just taking her off cold turkey, so maybe she can come off those at next month’s appointment on May 12th. She will be on the Enalapril (Blood Pressure Medicine) for life.
She weighed in at EIGHTEEN POUNDS & NINE OUNCES!!! She gained about a pound since we were there last. And she was almost 28 inches tall. Dr. Milazzo is very pleased with Janna’s growth, recovery, etc. She has had A LOT of energy the last couple weeks also. And she’s eating well since her top two teeth cut through. While she was cutting them, she didn’t want to eat much of anything, but YOGURT! Her favorite!
This past Saturday Janna got to go to a Family Reunion/Pig Pickin’/Anniversary in Clinton. Many were there that hadn’t seen her since she was very young and many got to see her for the first time, as you know we haven’t taken her out of the house much with all the heart issues. She had a fun time and was all smiles. I’ll include a picture of all the kids below. And for the first time ever, she stayed awake until 10pm! There was just too much going on for her to shut those eyes. It caught up with her the next day though and she took some long naps. It was so good to see some of our family that we don’t often see and to fellowship and eat some GREAT food! The dessert table was outstanding! Of course Janna had squash, yogurt, and milk. She’s starting to eat more table food, but hasn’t quite made the full transition. I didn’t think BBQ would be a good start - LOL. Thanks to Denise and Larry for hosting the Reunion and all the others in Clinton that helped provide such a wonderful time. We also celebrated Uncle Stacy and Aunt Lib’s 61st Wedding Anniversary! Uncle Stacy is Janna’s Great-Grandmama Macie’s baby brother. Janna was named after Macie (middle name). Janna also loved sitting with and loving on her Great Aunt Gracie, who is Macie’s twin sister. She will be 91 this summer. You can see her sitting in the back of the kids’ picture below.
Once again, we cannot thank the Lord enough for blessing our baby girl with a good cardiology report and weight gain and health! We give Him all the praise for this! And thanks to everyone that prays for our angel!
Now for some smiles……
I didn’t say you could take my picture, Momma!
PEEK-A-BOO!
Really enjoying some Baby Einstein……
Ooooooooooo
Momma, can’t you see I’m busy.
Back to my show……and yes I cut her banes last night – I couldn’t take it any longer!
Playing with my cups Aunt Carla gave to me.
More Dental Care in my UNC shirt Aunt Chanda & Uncle Curtis gave me for Chirstmas.
All the kids at the West Reunion this past Saturday (April 8th, 2006)
Janna and cousin Colby already had their jammies on at this point – just in case LOL!
Wagon Smiles also from this past weekend.
Weeeeeeee……this IS FUN!!!
Had to make a FUNNY FACE picture!
I see you over there daddy!
Tuesday, March 28, 2006
HAPPY BIRTHDAY JOSEPH!!!
Tomorrow (March 29th) is Joe’s birthday and I want to dedicate this journal entry to the BEST daddy in the world! Janna loves her daddy so much and he always gets the biggest smiles. He takes such good care of her. He takes her outside to enjoy her swing, wagon rides, shoulder rides, etc. He washes bottles, makes formula, changes crib sheets, bathes and dresses Janna, works with her on physical development. He even changes diapers! And the one thing that he was worried about when we found out we were having a girl - 'I won't know how to do her hair?!' Well, he even puts her hair up in a whale spout - she fusses with him some, but he CAN do it. Joe, you are the best daddy to Janna and she loves you very much - and mommy does too! HAPPY BIRTHDAY! We are so blessed to have you and we hope that you have the best birthday ever – no one deserves it more than you! Love always, AJ and Janna Macie
Janna smiles below – keep scrolling……
March 21st , 2006 was the first ever World Down syndrome Day
and I just wanted to share a link with you to let you know. March 21st was appropriately chosen as it symbolizes Trisomy-21 (03-21) as the 21st chromosome is triplicated in those with Ds. Here are some Ds facts that I thought you might find interesting;
* 1 out of 5 children with Ds plays a musical instrument. For children older than 10, that number doubles. 1 out of 5 children with Ds sing in a choir or vocal group, for children older than 10, it is every 1 in 3
* 2 out of every 3 children with Ds like to draw and/or paint pictures
* Approx. 9 out of every 10 individuals with Ds listened to someone read a book more than 3 times a week between the ages of 2-5
* Approx. 7 out of 10 children with Ds use total communication (signs, etc.) between the ages of 2-5
* Approx. 7 out of 10 kids with Ds saw a speech therapist 2 or more times a week between the ages of 2 and 5
* Approx. 1 out of every 3 children with Ds older than 10, rides a bike without training wheels
* 7 out of every 10 individuals with Ds older than 10, participates on an athletic team through Special Olympics
* 2 out of every 5 individuals with Ds participates on an integrated athletic team.
* According to their families, 3 out of 5 individuals with Ds know how to operate a computer
* 1 out of every 3 individuals with Ds older than 10, reads the daily newspaper on his or her own
* 7 out of 10 individuals with Ds older than 10, read books on their own for personal enjoyment
* 1 out of 2 children with Ds go to school in a mainstreamed class
* 3 out of 5 children with Ds participate in school activities that are open to all students.
* According to their families, 1 out of 5 children with Ds talk on the phone with friends more than 3 times a week. For children older than ten, that number doubles.
* 1 out of 3 children with Ds write email regularly
* 2 out of 3 children with Ds over age ten have a boyfriend or girlfriend!
* Approx. 7 out of 10 children with Ds pray on a regular basis
* According to their families, approx. 7 out of 10 individuals with Ds imitate characters from a television program or movie
* Approx. 2 out of 3 individuals with Ds older than 10, prepare their own breakfast each morning.
* 3 out of 4 individuals with Ds older than 10, make their own bed in the morning
* 1 out of 2 individuals with Ds (older than 18) work in a non-sheltered workplace
* 1 out of 5 individuals with Ds (18 or older) lives on his or her own
And here are some recent pictures of the good girl;
Our Happy Country Girl!
Playing with my shoes………
Me and mommy went to visit Uncle Andy and Freckles (my cousin Tara’s big pony)
Tackling a Gold Fish Snack
Our Happy Carolina Fan! We still love ‘em although they didn’t get
anywhere in the NCAA this year.
YAY! Go HEELS!!!
Daddy helping me take steps……
Proud of myself standing at my wagon……
Big Grins……
Checking out my friend in the mirror……
And giving her KISSES!
BIG SLPASH!!!
Learning to swim already……
Okay we are TARHEEL fans, but we have to be DUKE Medical fans……
Carolina Dreaming……
This is my UNC Blanket that Mrs. Sheila Mo from church made for me – yea, everyone spoils me : )
I will close with this word from the book of Psalm. Sometimes we think we have to be so strong to deal with the things we face in life. I’m sure you’ve heard the phrase, “Let go and let God.’ Well, we are learning that it is so much easier to do just that. God handles things so much better than we can ourselves. Facing a trial, climbing a mountain, crossing a river? Let go and let God carry you – His ride provides the best seat. Joe and I often joke about being in a ‘tough seat’ when we are dealing with various things. There are ‘tough seats’ in life, but give the control to God as He always provides an easy landing. He didn’t say the ride wouldn’t sometimes be bumpy, He didn’t say you wouldn’t have some flat tires or get rear-ended, but He did promise to never leave you and He promises to be your STRONGHOLD!
Be God’s, AJ
Psalm 31:14-15
Turn things over to God. He knows better what to do with them than you do. Let God carry you. He is better to do that than you. It is letting go, not holding on that makes you strong. Give control to God!
Psalm 18:2
"The LORD is my rock and my fortress and my deliverer, my God, my rock, in whom I take refuge; my shield and the horn of my salvation, my stronghold."
Psalm 9:9
"The LORD also will be a stronghold for the oppressed, a stronghold in times of trouble."
Tuesday, March 28, 2006
HAPPY BIRTHDAY JOSEPH!!!
Tomorrow (March 29th) is Joe’s birthday and I want to dedicate this journal entry to the BEST daddy in the world! Janna loves her daddy so much and he always gets the biggest smiles. He takes such good care of her. He takes her outside to enjoy her swing, wagon rides, shoulder rides, etc. He washes bottles, makes formula, changes crib sheets, bathes and dresses Janna, works with her on physical development. He even changes diapers! And the one thing that he was worried about when we found out we were having a girl - 'I won't know how to do her hair?!' Well, he even puts her hair up in a whale spout - she fusses with him some, but he CAN do it. Joe, you are the best daddy to Janna and she loves you very much - and mommy does too! HAPPY BIRTHDAY! We are so blessed to have you and we hope that you have the best birthday ever – no one deserves it more than you! Love always, AJ and Janna Macie
Janna smiles below – keep scrolling……
March 21st , 2006 was the first ever World Down syndrome Day
and I just wanted to share a link with you to let you know. March 21st was appropriately chosen as it symbolizes Trisomy-21 (03-21) as the 21st chromosome is triplicated in those with Ds. Here are some Ds facts that I thought you might find interesting;
* 1 out of 5 children with Ds plays a musical instrument. For children older than 10, that number doubles. 1 out of 5 children with Ds sing in a choir or vocal group, for children older than 10, it is every 1 in 3
* 2 out of every 3 children with Ds like to draw and/or paint pictures
* Approx. 9 out of every 10 individuals with Ds listened to someone read a book more than 3 times a week between the ages of 2-5
* Approx. 7 out of 10 children with Ds use total communication (signs, etc.) between the ages of 2-5
* Approx. 7 out of 10 kids with Ds saw a speech therapist 2 or more times a week between the ages of 2 and 5
* Approx. 1 out of every 3 children with Ds older than 10, rides a bike without training wheels
* 7 out of every 10 individuals with Ds older than 10, participates on an athletic team through Special Olympics
* 2 out of every 5 individuals with Ds participates on an integrated athletic team.
* According to their families, 3 out of 5 individuals with Ds know how to operate a computer
* 1 out of every 3 individuals with Ds older than 10, reads the daily newspaper on his or her own
* 7 out of 10 individuals with Ds older than 10, read books on their own for personal enjoyment
* 1 out of 2 children with Ds go to school in a mainstreamed class
* 3 out of 5 children with Ds participate in school activities that are open to all students.
* According to their families, 1 out of 5 children with Ds talk on the phone with friends more than 3 times a week. For children older than ten, that number doubles.
* 1 out of 3 children with Ds write email regularly
* 2 out of 3 children with Ds over age ten have a boyfriend or girlfriend!
* Approx. 7 out of 10 children with Ds pray on a regular basis
* According to their families, approx. 7 out of 10 individuals with Ds imitate characters from a television program or movie
* Approx. 2 out of 3 individuals with Ds older than 10, prepare their own breakfast each morning.
* 3 out of 4 individuals with Ds older than 10, make their own bed in the morning
* 1 out of 2 individuals with Ds (older than 18) work in a non-sheltered workplace
* 1 out of 5 individuals with Ds (18 or older) lives on his or her own
And here are some recent pictures of the good girl;
Our Happy Country Girl!
Playing with my shoes………
Me and mommy went to visit Uncle Andy and Freckles (my cousin Tara’s big pony)
Tackling a Gold Fish Snack
Our Happy Carolina Fan! We still love ‘em although they didn’t get
anywhere in the NCAA this year.
YAY! Go HEELS!!!
Daddy helping me take steps……
Proud of myself standing at my wagon……
Big Grins……
Checking out my friend in the mirror……
And giving her a KISSES!
BIG SLPASH!!!
Learning to swim already……
Okay we are TARHEEL fans, but we have to be DUKE Medical fans……
Carolina Dreaming……
This is my UNC Blanket that Mrs. Sheila Mo from church made for me – yea, everyone spoils me : )
I will close with this word from the book of Psalm. Sometimes we think we have to be so strong to deal with the things we face in life. I’m sure you’ve heard the phrase, “Let go and let God.’ Well, we are learning that it is so much easier to do just that. God handles things so much better than we can ourselves. Facing a trial, climbing a mountain, crossing a river? Let go and let God carry you – His ride provides the best seat. Joe and I often joke about being in a ‘tough seat’ when we are dealing with various things. There are ‘tough seats’ in life, but give the control to God as He always provides an easy landing. He didn’t say the ride wouldn’t sometimes be bumpy, He didn’t say you wouldn’t have some flat tires or get rear-ended, but He did promise to never leave you and He promises to be your STRONGHOLD!
Be God’s, AJ
Psalm 31:14-15
Turn things over to God. He knows better what to do with them than you do. Let God carry you. He is better to do that than you. It is letting go, not holding on that makes you strong. Give control to God!
Psalm 18:2
"The LORD is my rock and my fortress and my deliverer, my God, my rock, in whom I take refuge; my shield and the horn of my salvation, my stronghold."
Psalm 9:9
"The LORD also will be a stronghold for the oppressed, a stronghold in times of trouble."
Tuesday, March 14, 2006
I would like to thank everyone for praying for little Colton. His heart surgery was very successful and he was home in 5 days, with a big appetite. It also looks like he will not need any more surgeries. His mom and family thank you for praying for their little angel. He is doing really well.
Janna is also continuing to do well. There is not a big difference in her since her surgery as far as eating and energy go. But she wasn’t showing true signs of the valve leak to begin with. And we know that is because the Lord was and still is taking care of her. She is eating/drinking well. At her one year well-baby check on March 3rd, she weighed nearly 18 lbs., was 28 “ long, and her head had grown nearly an inch since we were there last. She really has the ‘white coat syndrome’ since this last surgery. She was not happy to visit the doctor although she did okay. When a nurse or the doctor entered the room, she would turn her head away from them and that bottom lip would poke out. We hope she will start back liking her doctors again soon. She has a cardiology appointment on April 7th. They will then do the first echo since she left Duke to see how things have settled inside. We are praying for a clean repair and minimal leakage.
The cardiologist told us that Janna would be more susceptible to things for a few weeks after surgery so we have been a bit protective. We will start getting her out more now, since the weather is warming up and it’s been a month this week since her surgery. We are so blessed and happy that she is getting along so well. You would not even think that this child just had heart surgery unless you knew it.
Janna has really been enjoying the warm days we’ve had lately. She likes going outside and swinging, riding in her wagon, and getting to see Jack (dog). She gets very excited when Jack comes around. Daddy is still staying home with her a few days a week and they always have fun. MeMa and PaPa are still coming once, sometimes twice a week to stay with Janna also. They say she is just the nicest girl all day – I guess they are a little prejudice. They all three have fun and really enjoy one another. I almost forgot, Janna has got another tooth – on the bottom, right beside her first one. You should be able to see them in some of the pictures below. Once again we thank God for our little miracle. She is such a blessing to us. AJ
Smiley Girl
The Teeth
She was TELLING me something!
When momma’s away, Jack has his way and Janna loves it!
Another big smile – note; daddy is prepared with 2 bibs : )
Our Happy Girl!
Sitting on the tractor
My new whale spout hair do
More smiles in the swing
She’s graduated to the tub – so she can SPLASH all she wants
Friday, February 24, 2006
I’m sure you know by now that Janna is home. Once again we give ALL praise to God for blessing her with a successful surgery. Thanks to everyone for remembering Janna and for all the prayers – they truly worked! The Lord really blessed our angel with a smooth surgery, an unexpected repair versus replacement valve, a quick bounce back and a trip home sooner than anyone anticipated. As I said in the last journal entry, Janna is very glad to be home and is still doing great. Again, thanks so much for the prayer support.
She visited her cardiologist yesterday and got a good report. Dr. Milazzo is very pleased with how Janna is doing. She will be on diuretics for awhile to help remove all the fluid from her chest. We hope she will be off of these soon. She will continue taking Enalapril (blood pressure medicine) to help with the valve leak. Dr. Milazzo also took Janna’s two stitches out from where the drainage tubes were. They used medical glue for the chest incision, which is so wonderful – no stitches to be removed there.
I would like to ask you to pray for little Colton. He is 7 months old and is having heart surgery next week, Feb. 28th out in California, where he lives. Please add him to your prayer list and lift him and his family as they face this surgery next week. He is having the same type surgery Janna had last summer to repair holes in his heart.
Here’s a picture of sweet Colton.
I can’t begin to post all the recent pictures that I want to post as there are just too many. Plus, for those of us with dial-up, it takes soooooooooooo long to pull up Janna’s page when there are a lot of pictures. I’ve narrowed it down to the following – sorry if all these pictures make your computer slow.
Some bath pictures prior to surgery last week.
All done and still wanting to play…………hopefully she’ll still love a bath once she’s old
enough to play outside in the dirt!
What she looked like prior to the bath.
Here’s a picture of me wearing my bandana that Colton sent to me to have for my heart surgery.
It has a beautiful cross on it that his mommy made just for me.
Here I am smiling on pre-op day, which was actually done on February 8th. My Feb. 9th surgery
date got moved to February 16th. I was all smiles until they took me back to draw blood…………
‘Hands Up’ They also did a chest x-ray
WARNING – there are some surgery pictures below that some may NOT want to see. They are not bad in my opinion but I know some people may not like to see post heart surgery pictures – just a warning. Skim past the next few really fast and then it’s all smiles……until the end. Then there are more hospital and at home photos of baby girls’ ‘Badge of Courage’. Sorry if these bother anyone, but it’s all part of what our angel is – a true miracle sent by God alone.
Here we are just minutes before they took me back for surgery. I was hungry but I handled it well, especially after I took a nap with mommy holding me.
The Works……Immediately following surgery
Drinking Pedialyte the day after my surgery
Sleeping Beauty with her much needed arm restraints
My Cool Cross Bandana
Okay……I’ll smile for daddy (1 day after surgery)
Holding daddy’s hand, waiting on a room in the Step-Down Unit
Trying really hard NOT to be tempted to pull my Pulse/Oximeter wire off.
I really loved looking at my red glowing toe.
Just lying around the hospital sucking my thumb like last time – and wanting to go HOME!
Some smiles from the Good Girl
Okay – here come some incision/scar pictures – skim fast if you do not want to see.
Please excuse my bloody nose – the vent tube irritated it and I wouldn’t let mommy clean it up
These toys are really cool momma but I much rather play with the hospital wipes container
Rocking with MeMa
Really concentrating on what Mommy is telling me
Happy to be home from getting my Synagis Shot at Goldsboro Pediatrics Tuesday
(day 6 post surgery)
The BADGE of COURAGE (day 6 post surgery)
Clapping for bath time and smiling at daddy
This is one tired girl – she’s finally catching up on sleep now that she’s home
Back to my smiley self (day 6 post surgery)
‘Ooooooh’ – it looks tough, but it sure doesn’t seem to bother Janna at all
A Happy Squeal of Joy – so glad to be back in my own crib for the night
(day 5 post surgery – 1st night back at home)
Friday, February 24, 2006
I’m sure you know by now that Janna is home. Once again we give ALL praise to God for blessing her with a successful surgery. Thanks to everyone for remembering Janna and for all the prayers – they truly worked! The Lord really blessed our angel with a smooth surgery, an unexpected repair versus replacement valve, a quick bounce back and a trip home sooner than anyone anticipated. As I said in the last journal entry, Janna is very glad to be home and is still doing great. Again, thanks so much for the prayer support.
She visited her cardiologist yesterday and got a good report. Dr. Milazzo is very pleased with how Janna is doing. She will be on diuretics for awhile to help remove all the fluid from her chest. We hope she will be off of these soon. She will continue taking Enalapril (blood pressure medicine) to help with the valve leak. Dr. Milazzo also took Janna’s two stitches out from where the drainage tubes were. They used medical glue for the chest incision, which is so wonderful – no stitches to be removed there.
I would like to ask you to pray for little Colton. He is 7 months old and is having heart surgery next week, Feb. 28th out in California, where he lives. Please add him to your prayer list and lift him and his family as they face this surgery next week. He is having the same type surgery Janna had last summer to repair holes in his heart.
Here’s a picture of sweet Colton.
I can’t begin to post all the recent pictures that I want to post as there are just too many. Plus, for those of us with dial-up, it takes soooooooooooo long to pull up Janna’s page when there are a lot of pictures. I’ve narrowed it down to the following – sorry if all these pictures make your computer slow.
Some bath pictures prior to surgery last week.
All done and still wanting to play…………hopefully she’ll still love a bath once she’s old
enough to play outside in the dirt!
What she looked like prior to the bath.
Here’s a picture of me wearing my bandana that Colton sent to me to have for my heart surgery.
It has a beautiful cross on it that his mommy made just for me.
Here I am smiling on pre-op day, which was actually done on February 8th. My Feb. 9th surgery
date got moved to February 16th. I was all smiles until they took me back to draw blood…………
WARNING – there are some surgery pictures below that some may NOT want to see. They are not bad in my opinion but I know some people may not like to see post heart surgery pictures – just a warning. Skim past the next few really fast and then it’s all smiles……until the end. Then there are more hospital and at home photos of baby girls’ ‘Badge of Courage’. Sorry if these bother anyone, but it’s all part of what our angel is – a true miracle sent by God alone.
Here we are just minutes before they took me back for surgery. I was hungry but I handled it well, especially after I took a nap with mommy holding me.
The Works……Immediately following surgery
Drinking Pedialyte the day after my surgery
Sleeping Beauty with her much needed arm restraints
My Cool Cross Bandana
Okay……I’ll smile for daddy (1 day after surgery)
Holding daddy’s hand, waiting on a room in the Step-Down Unit
Trying really hard NOT to be tempted to pull my Pulse/Oximeter wire off.
I really loved looking at my red glowing toe.
Just lying around the hospital sucking my thumb like last time – and wanting to go HOME!
Some smiles from the Good Girl
Okay – here come some incision/scar pictures – skim fast if you do not want to see.
Please excuse my bloody nose – the vent tube irritated it and I wouldn’t let mommy clean it up
These toys are really cool momma but I much rather play with the hospital wipes container
Rocking with MeMa
Really concentrating on what Mommy is telling me
Happy to be home from getting my Synagis Shot at Goldsboro Pediatrics Tuesday
(day 6 post surgery)
The BADGE of COURAGE (day 6 post surgery)
Clapping for bath time and smiling at daddy
This is one tired girl – she’s finally catching up on sleep now that she’s home
Back to my smiley self (day 6 post surgery)
‘Ooooooh’ – it looks tough, but it sure doesn’t seem to bother Janna at all
A Happy Squeal of Joy – so glad to be back in my own crib for the night
(day 5 post surgery – 1st night back at home)
Tuesday, February 21, 2006
Janna is HOME! We made it back to Wayne County around 7:00 last night. Her heart surgery was very successful. Dr. Jaggers was able to repair her mitral valve and didn't have to replace it. The valve is not perfect - it still leaks some, but it is a lot better than it was. Her blood pressure medicine will help with this leak. It's much better for Janna to have her own valve and not a mechanical one. We thank God for this as her surgeon was not very hopeful that it could be repaired. Janna bounced back quickly and tried to pull all wires out as soon as she was awake. She was only in ICU for one night and made it to a step-down room the day after surgery. She was playing, clapping and rocking to music by day three. And she is SO GLAD TO BE HOME! I will soon post pictures of the big event. Baby girl never lost her sweet smile. We always thank God for giving her a happy smile. We thank everyone so much for their concern and prayers - they really worked as the Lord blessed Janna with a smooth and successful surgery, and she is recovering exceptionally well. She will visit her cardiologist Thursday of this week. Check back soon for some smiling pictures...........hopefully I'll have them posted by the weekend - we've got a lot of catching up to do. Be God's, AJ
Tuesday, February 21, 2006
Janna is HOME! Her heart surgery was very successful. Dr. Jaggers was able to repair her mitral valve and didn't have to replace it. The valve is not perfect - it still leaks some, but it is a lot better than it was. Her blood pressure medicine will help with this leak. It's much better for Janna to have her own valve and not a mechanical one. We thank God for this as her surgeon was not very hopeful that it could be repaired. Janna bounced back quickly and tried to pull all wires out as soon as she was awake. She was only in ICU for one night and made it to a step-down room the day after surgery. She was playing, clapping and rocking to music by day three. And she is SO GLAD TO BE HOME! I will soon post pictures of the big event. Baby girl never lost her sweet smile. We always thank God for giving her a happy smile. We thank everyone so much for their concern and prayers - they really worked as the Lord blessed Janna with a smooth and successful surgery, and she is recovering exceptionally well. She will visit her cardiologist Thursday of this week. Check back soon for some smiling pictures...........hopefully I'll have them posted by the weekend - we have a lot of catching up to do. AJ
Thursday, February 2, 2006
HAPPY BIRTHDAY SWEET BABY GIRL! Mommy and Daddy love you very, very much!
I can hardly believe that I am posting a journal entry concerning our baby girl being ONE!
We never expected to have an angel baby, much less ALL the joy that has come with her. As I reflect back over this year, I come across too many emotions to type out. It’s been full of joy, smiles, tears, heartaches, challenges, but most of all, LOVE. A love that most people never get to touch. Once again, I’m not going to fill this page with a lot of words. I will post something that I wrote awhile back for the good girl – it’s quite personal but I want to share it with you all in hopes that you can get a glimpse of what this angel means to us and our family. I will also leave you with lots of memorable pictures of Janna’s first year in skin. Thanks for sharing in Janna’s wonderful journey with us. God bless you, AJ
My Angel in Skin
I must have cried a thousand tears, standing over you.
Praying for your heart, your health, and your feelings too.
Will they see the angel that I see when they look at you?
Will they know that God has special plans for your life too?
I pray I will be able to give you all you need,
To guide your steps on earth ‘til you reach eternity.
I cannot be beside you each and every day,
But I trust the Lord to watch over you during your stay.
I pray for others to love you and help you on your way,
When I no longer walk this earth nor see the light of day.
May He use your life to brighten others here below,
And may they see His love in your smile all aglow.
May their hearts be changed forever when they feel your pure love,
May they look at others differently with eyes from up above.
I never knew this feeling until you came along,
Giving my life new meaning and my heart a new song.
And I pray that it sings forever for all the world to see,
What a blessing you are, my angel in skin, God picked you just for me.
Written by; AJ Sutton Fall 2005
Remember these?
Our Angel Baby
Our Lady of Leisure
Bath Time early on – Little Bit.
Being strong and playing with my toys.
Daddy’s just burping me, not choking me.
Sucking my thumb early on just like momma and Aunt Chanda did.
Big Yawn
UNC Girl/Flexible Smile
Who me? Make a mess? 
My COOL Sunglasses
Enjoying a Biter Biscuit/Chilling on the couch
Salute to UNCLE BRYAN and all the TROOPS!
Pretty Girl in her swing
Summer Smiles
A Big Milky Kiss
Duke PICU June 2005 (4 months old)
Just lying around after surgery sucking my thumb and wanting to go HOME
Thanks daddy for holding my hand. She tried to escape but got tired and fell asleep.
They had all kinds of medicine hooked up to me at one point.
This is what they call an EEG,
checking my brain out for seizure activity. / I don’t like covers!
Thanks be to God that this time is behind me.
Fighting a Urinary Tract Infection and smiling through most of it.
The Good Girl
Snoozing with Daddy on the deck.
Wake Med for UTI August 2005
All Smiles……
Leaving Wake Med
Sunday Dress Smile with allergy eyes
My first Professional Picture September 2005
My Tigger suit that Justin Tart gave me
Dedication to the Lord October 9, 2005
Our Country Girl in her Brogans October 2005
Our Rabbit Stew that we NEVER cooked!
Bandana Janna fell asleep on the floor.
Watching Baby Einstein and doing my exercises.
Playing in the Leaves Fall 2005
Looking UP!
The Happy Girl
Christmas Smiles
The Christmas Suit my Great Aunt Jewel and Lynda sent from Greensboro
The disheartening Cardiology Appt. January 6, 2006
Splish Splash
My First Tooth
Minny Mouse Overalls courtesy of Kelsey Tart, Justin's sister.
Happy Girl in her Nightgown
Bed Time Dance
We have a CHEWER!
Playing prior to Heart Catherterization 
Look what they've done to my feet momma! Blue Hooves!
Well, I'll get 'em off, and she did.
After Heart Catheterization Jan. 25, 2006
A bit groggy and none too happy about the oxygen taped to her face.
All tired out from Heart Catheterization
This girl is serious about brushing her tooth!
Definitely a Masterpiece!
PLEASE SIGN MY GUESTBOOK. Mommy and daddy would love to know you were here.
Thursday, February 2, 2006
HAPPY BIRTHDAY SWEET BABY GIRL! Mommy and Daddy love you very, very much!
I can hardly believe that I am posting a journal entry concerning our baby girl being ONE!
We never expected to have an angel baby, much less ALL the joy that has come with her. As I reflect back over this year, I come across too many emotions to type out. It’s been full of joy, smiles, tears, heartaches, challenges, but most of all, LOVE. A love that most people never get to touch. Once again, I’m not going to fill this page with a lot of words. I will post something that I wrote awhile back for the good girl – it’s quite personal but I want to share it with you all in hopes that you can get a glimpse of what this angel means to us and our family. I will also leave you with lots of memorable pictures of Janna’s first year in skin. Thanks for sharing in Janna’s wonderful journey with us. God bless you, AJ
My Angel in Skin
I must have cried a thousand tears, standing over you.
Praying for your heart, your health, and your feelings too.
Will they see the angel that I see when they look at you?
Will they know that God has special plans for your life too?
I pray I will be able to give you all you need,
To guide your steps on earth ‘til you reach eternity.
I cannot be beside you each and every day,
But I trust the Lord to watch over you during your stay.
I pray for others to love you and help you on your way,
When I no longer walk this earth nor see the light of day.
May He use your life to brighten others here below,
And may they see His love in your smile all aglow.
May their hearts be changed forever when they feel your pure love,
May they look at others differently with eyes from up above.
I never knew this feeling until you came along,
Giving my life new meaning and my heart a new song.
And I pray that it sings forever for all the world to see,
What a blessing you are, my angel in skin, God picked you just for me.
Written by; AJ Sutton Fall 2005
Remember these?
Our Angel Baby
Our Lady of Leisure
Bath Time early on – Little Bit.
Being strong and playing with my toys.
Daddy’s just burping me, not choking me.
Sucking my thumb early on just like momma and Aunt Chanda did.
Big Yawn
UNC Girl/Flexible Smile
Who me? Make a mess?
My COOL Sunglasses
Enjoying a Biter Biscuit/Chilling on the couch
Salute to UNCLE BRYAN and all the TROOPS!
Pretty Girl in her swing
Summer Smiles
A Big Milky Kiss
Duke PICU June 2005 (4 months old)
Just lying around after surgery sucking my thumb and wanting to go HOME
Thanks daddy for holding my hand. She tried to escape but got tired and fell asleep.
They had all kinds of medicine hooked up to me at one point.
This is what they call an EEG,
checking my brain out for seizure activity. / I don’t like covers!
Thanks be to God that this time is behind me.
Fighting a Urinary Tract Infection and smiling through most of it.
The Good Girl
Snoozing with Daddy on the deck.
Wake Med for UTI August 2005
All Smiles……
Leaving Wake Med
Sunday Dress Smile with allergy eyes
My first Professional Picture September 2005
My Tigger suit that Justin Tart gave me
Dedication to the Lord October 9, 2005
Our Country Girl in her Brogans October 2005
Our Rabbit Stew that we NEVER cooked!
Bandana Janna fell asleep on the floor.
Watching Baby Einstein and doing my exercises.
Playing in the Leaves Fall 2005
Looking UP!
The Happy Girl
Christmas Smiles
The disheartening Cardiology Appt. January 6, 2006
Splish Splash
My First Tooth
Minny Mouse Overalls courtesy of Kelsey Tart, Justin's sister.
Happy Girl in her Nightgown
Bed Time Dance
We have a CHEWER!
Look what they've done to my feet momma! Blue Hooves!
Well, I'll get 'em off, and she did.
After Heart Catheterization Jan. 25, 2006
A bit groggy and none too happy about the oxygen taped to her face.
All tired out from Heart Catheterization
This girl is serious about brushing her tooth!
Definitely a Masterpiece!
PLEASE SIGN MY GUESTBOOK. Mommy and daddy would love to know you were here.
Thursday, January 26, 2006
For those who may not know, things have got a little off schedule. Janna had a heart catheterization yesterday and it all went well. They got a lot of good information to help Janna during and post surgery. We are once again waiting on a phone call to schedule the surgery within the next week or two. I will post in the hospital section below once we have a date. We thank you for your prayers. We are still believing and praying for another miracle, AJ
Wednesday, January 18, 2006
As you probably know, Janna is scheduled for her second open-heart surgery on Tuesday, January 24th. We will head to Duke on Monday for all the pre-op work, which starts at 9:30am. We will meet with the surgeon and she will have a sedated echo, chest x-ray, etc.
Daddy took Janna last week for some blood work. Her cardiologist wanted her electrolytes checked since he increased her diuretics. It was not a pretty scene. She’s just such a hard stick. Dr. Tayloe felt so bad afterwards. He got her vein right away, but it wouldn’t give up blood. He had to stick her several more times before he could get blood to flow. We’re all happy to say that everything was normal, so it doesn’t have to be repeated! She came home with 3 band-aids and wet eyelashes. But she was happy and played hard the rest of the evening.
Daddy also took Janna in for her monthly Synagis shot earlier this week. Her and daddy are getting to be close buddies these days. She was at the same weight she was a week and a half ago at her cardiologist appointment - 16lb. 5oz. She has not been drinking her milk quite as well over the last week, but she is still eating very well by spoon. She sees her cardiologist again Friday (20th) so we will check her weight again there. So, we have 2 more echoes before surgery – 2 more chances to see if the valve has been healed. We have been praying strong that the Lord WILL miraculously heal this for her.
Please keep praying and BELIEVE with us.
"Jesus said, "Anything is possible if a person believes."
Mark 9:23
I’m not going to talk your ear off this time. I’m just going to let you enjoy lots of pictures of the good girl.
My ATTEMPT to get a good picture of the TOOTH for you;
Momma – I’m not really interested in opening my mouth this morning.
I’ll show you my lip.
I’ll chew on the washcloth.
I SAID I’m not interested!
I’ll play with my jaws clinched.
Ooops – you missed again. I JUST had my mouth open.
I’ll smile for you.
And I’ll clinch some more.
Here’s my gum but I’m not showing you my tooth!
Play with the bottle?
Okay – I’ll play with the bottle.
Oh, did I open wide? Sure didn’t mean to. (see bottom front tooth hiding just to right of bottle)
A better shot from another day – FINALLY!
And one from when it was first breaking through – you can barely see it in the glare.
Just chilling in my swing.
Enjoying the ride.
Don’t dare think about taking me out yet.
This is TOO much fun!
Besides GREENBEANS, Janna loves SPLASHING and soaking the kitchen best!
Let’s SLAM DUNK the DUCK!
I’ve got some WILD hair just after my baths.
Our BIKER BABY – another cool outfit that Justin Tart passed on to Janna.
And my new bandana goes well with it.
Yeahhhhhhhhhhhh!
Okay, momma, I’m tired of wearing this on my head.
There………
I did it!
I much rather CHEW on it, momma.
Or play Peek-A-Boo!
Not all of you know that momma sold her bike not long after I came along. Here’s a picture.
A good ‘ole reliable Honda – not quite a Harley like the shirt I’m wearing in the pictures.
She sold it to Uncle Daniel (one of daddy’s best friends) so it’s still in the family.
She was a member of the CMA Chapter based out of Wilson, NC (Down East Fishers for Christ). You don’t have to own/ride a bike to be a member of the CMA. Check out the site when you have time CMA.
Momma’s ready to get me a little Honda 50 but daddy is a bit unsure about that and both grandmas will be too, once they read this. Maybe we’ll all agree on a little motorized scooter for later on.
I know it’s WAY after Christmas, but here are a few Christmas pictures;
Opening presents at MeMa and PaPa Sutton’s in Fayetteville Christmas Eve Day
Of course I enjoyed the PAPER!
What do I do next mommy?
Janna passed out before we got to presents at Grandma and Grandpa Best’,
but here are a few of her in the early part of the evening (day after Christmas).
Sitting by the Christmas Tree
Watching Baby Einstein while everyone else eats supper.
I’m chewing on a cool teething blanket Grandma got for me.
And one last one from Christmas morning – enjoying her toys and smiling at daddy.
And finally – some recent SMILES!
Sunshine Girl Smile
Needing a bath smile
Spinach Smile
Wednesday, January 18, 2006
As you probably know, Janna is scheduled for her second open-heart surgery on Tuesday, January 24th. We will head to Duke on Monday for all the pre-op work, which starts at 9:30am. We will meet with the surgeon and she will have a sedated echo, chest x-ray, etc.
Daddy took Janna last week for some blood work. Her cardiologist wanted her electrolytes checked since he increased her diuretics. It was not a pretty scene. She’s just such a hard stick. Dr. Tayloe felt so bad afterwards. He got her vein right away, but it wouldn’t give up blood. He had to stick her several more times before he could get blood to flow. We’re all happy to say that everything was normal, so it doesn’t have to be repeated! She came home with 3 band-aids and wet eyelashes. But she was happy and played hard the rest of the evening.
Daddy also took Janna in for her monthly Synagis shot earlier this week. Her and daddy are getting to be close buddies these days. She was at the same weight she was a week and a half ago at her cardiologist appointment - 16lb. 5oz. She has not been drinking her milk quite as well over the last week, but she is still eating very well by spoon. She sees her cardiologist again Friday (20th) so we will check her weight again there. So, we have 2 more echoes before surgery – 2 more chances to see if the valve has been healed. We have been praying strong that the Lord WILL miraculously heal this for her.
Please keep praying and BELIEVE with us.
"Jesus said, "Anything is possible if a person believes."
Mark 9:23
I’m not going to talk your ear off this time. I’m just going to let you enjoy lots of pictures of the good girl.
My ATTEMPT to get a good picture of the TOOTH for you;
Momma – I’m not really interested in opening my mouth this morning.
I’ll show you my lip.
I’ll chew on the washcloth.
I SAID I’m not interested!
I’ll play with my jaws clinched.
Ooops – you missed again. I JUST had my mouth open.
I’ll smile for you.
And I’ll clinch some more.
Here’s my gum but I’m not showing you my tooth!
Play with the bottle?
Okay – I’ll play with the bottle.
Oh, did I open wide? Sure didn’t mean to. (see bottom front tooth hiding just to right of bottle)
A better shot from another day – FINALLY!
And one from when it was first breaking through – you can barely see it in the glare.
Just chilling in my swing.
Enjoying the ride.
Don’t dare think about taking me out yet.
This is TOO much fun!
Besides GREENBEANS, Janna loves SPLASHING and soaking the kitchen best!
Let’s SLAM DUNK the DUCK!
I’ve got some WILD hair just after my baths.
Our BIKER BABY – another cool outfit that Justin Tart passed on to Janna.
And my new bandana goes well with it.
Yeahhhhhhhhhhhh!
Okay, momma, I’m tired of wearing this on my head.
There………
I did it!
I much rather CHEW on it, momma.
Or play Peek-A-Boo!
Not all of you know that momma sold her bike not long after I came along. Here’s a picture.
A good ‘ole reliable Honda – not quite a Harley like the shirt I’m wearing in the pictures.
She sold it to Uncle Daniel (one of daddy’s best friends) so it’s still in the family.
She was a member of the CMA Chapter based out of Wilson, NC (Down East Fishers for Christ). You don’t have to own/ride a bike to be a member of the CMA. Check out the site when you have time CMA.
Momma’s ready to get me a little Honda 50 but daddy is a bit unsure about that and both grandmas will be too, once they read this. Maybe we’ll all agree on a little motorized scooter for later on.
I know it’s WAY after Christmas, but here are a few Christmas pictures;
Opening presents at MeMa and PaPa Sutton’s in Fayetteville Christmas Eve Day
Of course I enjoyed the PAPER!
What do I do next mommy?
Janna passed out before we got to presents at Grandma and Grandpa Best’,
but here are a few of her in the early part of the evening (day after Christmas).
Sitting by the Christmas Tree
Watching Baby Einstein while everyone else eats supper.
I’m chewing on a cool teething blanket Grandma got for me.
And one last one from Christmas morning – enjoying her toys and smiling at daddy.
And finally – some recent SMILES!
Sunshine Girl Smile
Needing a bath smile
Spinach Smile
Monday, January 9, 2006
Sorry this is so long this time…………………
I started putting this journal entry together last week. We’ve experienced a big change since then. So I’m adding a paragraph at the end concerning Janna’s cardiology appointment from last Friday. We covet your prayers for our angel. See details in added paragraph below.
I’ve got a lot of catching ‘you’ up to do. Janna visited the ENT at Duke on December 14th. We were blessed with a wonderful Christmas gift there. Once again she passed all hearing screenings and her ears are in great shape. We don’t have to go back. Dr. Hulka referred us to an ENT in Goldsboro in case we ever need one. It was a long day but she was a good girl – she was asleep on my shoulder by the time the Dr. looked into her ears.
Janna got another neat Christmas present – her front bottom left tooth. Well, it didn’t make a full appearance by Christmas but it’s almost all up now. It hasn’t bothered her too bad. We are thankful for Baby Orajel and Tylenol though.
She really enjoyed her first Christmas although it tired her out. Christmas morning she went back to bed soon after she got up. We did a lot of visiting and she got to see her cousins and aunts/uncles and grandparents too of course.
Being a mother of a baby with Trisomy 21 (Down syndrome), I sometimes hear others say that, ‘no, having a child with a disability is not what I would have prayed or hoped for.’ BUT, those who are blessed with these special angels will tell you that it has changed their lives, and that of their family’s, for the better in many ways. You learn so much more about unconditional love, even if you already knew a bit about it. There are many things in our lives that we wouldn’t have asked for or prayed for or hoped for. But once God brings you far enough ahead you can look back and see and understand the good that has come from the things that we didn’t really want. We would not change a thing about Janna. She is perfect in God’s eyes and ours.
I would not have prayed/hoped that my husband would have hit a dog in the middle of the road on the way to work one night a year and a half ago, ruining the radiator in the car. But had he not, he may not have the stress-free and flexible job he has today. Because we took the car to a nearby mechanic, we ran into an old schoolmate of mine and got to talking. Just so happens, he had a job position open and guess who got it?
Joseph (in the Bible) would not have prayed that his brothers would sell him to some thieves where he’d be taken so far from his father and home. Although it was a bad thing, God used it for good and Joseph learned that and realized that when his brothers came back years later needing food due to famine in their own land.
It was a dark day when Christ was beaten and bruised, mocked and tormented, spit upon and pierced, bleeding up on that cross at Calvary. Truly a bad thing, but God meant it for good. He took on the sins of the whole world, facing hell so you nor I would ever have to. No way his mother could understand, at the time, why he had to endure all that.
Having a child with a disability is nothing to compare to the death of Christ and what He did for us – the ultimate sacrifice. But we can learn from all things in our lives, if we chose to.
I can hardly believe that a year has almost gone by. Our baby girl will soon be 1. What a year it has been! I know many do not have a lot of education when it comes to T21 and as learning parents, we have to choose who we educate. Some choose never to learn, some are just not teachable. But if you’ve made it this far into this entry, I feel like you are very teachable.
I pray that some day Janna looks back over all this jibber I’ve written and sees what a miracle she truly is. Did I mean that she would one day read this!!? Yes, I did. Many do not realize the potential of these angels. Years ago, a child with T21 did not get the support they needed and deserved, to live in a loving home, to grow up with their siblings and parents cheering them on. If you had been left alone or put in some home, you would not have developed or accomplished much either. If you had not received the proper health care or the therapy you needed to help you eat or hear or talk or crawl or walk, you would not have done those things too well. Thankfully, things are different. Janna will walk and talk and read and do many things that many don’t expect her to do. True, it may take her a little longer to accomplish these things, but she will get there. Now, I don’t know if she’ll ever drive a car, or live out on her own. We do have high expectations for her but that remains to be seen. But no matter what, she’ll always be perfect to us and God.
Many others with T21 have gone to college. Many are super musicians and artists. Some are married. Some have written books. Yes, many young kids with T21 are attending your everyday classrooms and reading and learning and doing very well – even making the honor roll. Those with disabilities may have delays, but it doesn’t mean that they can’t get there. Next time you see someone with a disability, just remember, they may not have gotten the support they needed and that may be why they can’t do this or that. But because they can’t do this or that doesn’t mean that they can’t get there. We’re all very teachable if we have lots of love and support.
Added paragraph concerning Janna’s cardiology appointment;
We really got some unexpected news last Friday. We were elated that Janna had gained 2 pounds since her last cardiology visit. She has been doing so well. She’s really healthy and strong and eating like a champ. But we were quite surprised when the echocardiogram told a different story. As Dr. Milazzo put it, ‘the echo doesn’t lie.’ Janna’s mitral valve is leaking severly. Blood is backing up into her lungs and this could cause pulmonary hypertension, which is irreversible. He increased her diuretics and blood pressure medicine. Dr. Milazzo has always been very optimistic about Janna overcoming this leaky valve. He/we thought that gaining weight, staying healthy, and taking blood pressure medicine was going to help her get over this. But it seems that over the last weeks the leak has gotten even worse, despite her weight gain, health, and strength. I tell you, Satan can attack, but he can’t even do that well when so many are praying. He may be attacking but God is keeping this child strong and healthy. You would not know how bad things are on the inside by watching her thrive and seeing her so strong and active. The only sign of all this is a little fast breathing at times. Janna will get the victory through Christ – He bore those stripes for her and the many others needing healing. So, Dr. Milazzo is consulting with Janna’s heart surgeon. We are waiting on a phone call. It seems that she may face open-heart surgery again soon. We are praying for healing – for a miracle, we’re praying for another route versus surgery, and preparing ourselves too if God provides that healing by guiding the hands of the surgeon once again. We appreciate your prayers.
Having said that – what I write next will make sense if you’ve had time to read the first part of this entry.
We would not have prayed that Janna would refuse to drink her milk at day-care many weeks ago, resulting in her having to stay at home with daddy 3 days a week and causing him to miss work. This has been going on since before Christmas. But, God knew exactly what He was doing. She did not need to be around other kids and take the chance of getting sick with her valve leaking so badly.
We would not have prayed that Janna hasn’t qualified for Physical Therapy and other therapies yet, although she is somewhat delayed in her development. We are happy she is doing so well but we also want to give her all she needs for her development. We realize that PT may have been too strenuous for her with the valve leaking so badly – maybe God knew she didn’t need to be that active yet.
We are thankful for the medical technology that’s available today - that Janna’s heart needs can be monitored and cared for. We thank God for caring for her and giving her good health and strength. We continue to pray for His healing touch. We thank you all for you concern and prayers.
"So let us come boldly to the throne of our gracious God. There we will receive his mercy, and we will find grace to help us when we need it."
Hebrews 4:16
In His name, AJ
I am having a lot of trouble posting pictures and turning them the correct way – you’ll have to turn your head on a few of these. Will add more Christmas ones later and a toofy picture if I can catch one.
A few pictures from Christmas morning;
Well, I got the bow off – it’s a start.
Think it’ll open if I hit it?
Here’s some paper daddy………
I love paper!
Now I’m getting somewhere.
A Glow Worm! Pretty cool, huh?
Playing with one of my new bandanas Grandma and Grandpa got me for Christmas.
I love it!
And I’ll close with a big, healthy smile!
Monday, January 9, 2006
Sorry this is so long this time…………………
I started putting this journal entry together last week. We’ve experienced a big change since then. So I’m adding a paragraph at the end concerning Janna’s cardiology appointment from last Friday. We covet your prayers for our angel. See details in added paragraph below.
I’ve got a lot of catching ‘you’ up to do. Janna visited the ENT at Duke on December 14th. We were blessed with a wonderful Christmas gift there. Once again she passed all hearing screenings and her ears are in great shape. We don’t have to go back. Dr. Hulka referred us to an ENT in Goldsboro in case we ever need one. It was a long day but she was a good girl – she was asleep on my shoulder by the time the Dr. looked into her ears.
Janna got another neat Christmas present – her front bottom left tooth. Well, it didn’t make a full appearance by Christmas but it’s almost all up now. It hasn’t bothered her too bad. We are thankful for Baby Orajel and Tylenol though.
She really enjoyed her first Christmas although it tired her out. Christmas morning she went back to bed soon after she got up. We did a lot of visiting and she got to see her cousins and aunts/uncles and grandparents too of course.
Being a mother of a baby with Trisomy 21 (Down syndrome), I sometimes hear others say that, ‘no, having a child with a disability is not what I would have prayed or hoped for.’ BUT, those who are blessed with these special angels will tell you that it has changed their lives, and that of their family’s, for the better in many ways. You learn so much more about unconditional love, even if you already knew a bit about it. There are many things in our lives that we wouldn’t have asked for or prayed for or hoped for. But once God brings you far enough ahead you can look back and see and understand the good that has come from the things that we didn’t really want. We would not change a thing about Janna. She is perfect in God’s eyes and ours.
I would not have prayed/hoped that my husband would have hit a dog in the middle of the road on the way to work one night a year and a half ago, ruining the radiator in the car. But had he not, he may not have the stress-free and flexible job he has today. Because we took the car to a nearby mechanic, we ran into an old schoolmate of mine and got to talking. Just so happens, he had a job position open and guess who got it?
Joseph (in the Bible) would not have prayed that his brothers would sell him to some thieves where he’d be taken so far from his father and home. Although it was a bad thing, God used it for good and Joseph learned that and realized that when his brothers came back years later needing food due to famine in their own land.
It was a dark day when Christ was beaten and bruised, mocked and tormented, spit upon and pierced, bleeding up on that cross at Calvary. Truly a bad thing, but God meant it for good. He took on the sins of the whole world, facing hell so you nor I would ever have to. No way his mother could understand, at the time, why he had to endure all that.
Having a child with a disability is nothing to compare to the death of Christ and what He did for us – the ultimate sacrifice. But we can learn from all things in our lives, if we chose to.
I can hardly believe that a year has almost gone by. Our baby girl will soon be 1. What a year it has been! I know many do not have a lot of education when it comes to T21 and as learning parents, we have to choose who we educate. Some choose never to learn, some are just not teachable. But if you’ve made it this far into this entry, I feel like you are very teachable.
I pray that some day Janna looks back over all this jibber I’ve written and sees what a miracle she truly is. Did I mean that she would one day read this!!? Yes, I did. Many do not realize the potential of these angels. Years ago, a child with T21 did not get the support they needed and deserved, to live in a loving home, to grow up with their siblings and parents cheering them on. If you had been left alone or put in some home, you would not have developed or accomplished much either. If you had not received the proper health care or the therapy you needed to help you eat or hear or talk or crawl or walk, you would not have done those things too well. Thankfully, things are different. Janna will walk and talk and read and do many things that many don’t expect her to do. True, it may take her a little longer to accomplish these things, but she will get there. Now, I don’t know if she’ll ever drive a car, or live out on her own. We do have high expectations for her but that remains to be seen. But no matter what, she’ll always be perfect to us and God.
Many others with T21 have gone to college. Many are super musicians and artists. Some are married. Some have written books. Yes, many young kids with T21 are attending your everyday classrooms and reading and learning and doing very well – even making the honor roll. Those with disabilities may have delays, but it doesn’t mean that they can’t get there. Next time you see someone with a disability, just remember, they may not have gotten the support they needed and that may be why they can’t do this or that. But because they can’t do this or that doesn’t mean that they can’t get there. We’re all very teachable if we have lots of love and support.
Added paragraph concerning Janna’s cardiology appointment;
We really got some unexpected news last Friday. We were elated that Janna had gained 2 pounds since her last cardiology visit. She has been doing so well. She’s really healthy and strong and eating like a champ. But we were quite surprised when the echocardiogram told a different story. As Dr. Milazzo put it, ‘the echo doesn’t lie.’ Janna’s mitral valve is leaking severly. Blood is backing up into her lungs and this could cause pulmonary hypertension, which is irreversible. He increased her diuretics and blood pressure medicine. Dr. Milazzo has always been very optimistic about Janna overcoming this leaky valve. He/we thought that gaining weight, staying healthy, and taking blood pressure medicine was going to help her get over this. But it seems that over the last weeks the leak has gotten even worse, despite her weight gain, health, and strength. I tell you, Satan can attack, but he can’t even do that well when so many are praying. He may be attacking but God is keeping this child strong and healthy. You would not know how bad things are on the inside by watching her thrive and seeing her so strong and active. The only sign of all this is a little fast breathing at times. Janna will get the victory through Christ – He bore those stripes for her and the many others needing healing. So, Dr. Milazzo is consulting with Janna’s heart surgeon. We are waiting on a phone call. It seems that she may face open-heart surgery again soon. We are praying for healing – for a miracle, we’re praying for another route versus surgery, and preparing ourselves too if God provides that healing by guiding the hands of the surgeon once again. We appreciate your prayers.
Having said that – what I write next will make sense if you’ve had time to read the first part of this entry.
We would not have prayed that Janna would refuse to drink her milk at day-care many weeks ago, resulting in her having to stay at home with daddy 3 days a week and causing him to miss work. This has been going on since before Christmas. But, God knew exactly what He was doing. She did not need to be around other kids and take the chance of getting sick with her valve leaking so badly.
We would not have prayed that Janna hasn’t qualified for Physical Therapy and other therapies yet, although she is somewhat delayed in her development. We are happy she is doing so well but we also want to give her all she needs for her development. We realize that PT may have been too strenuous for her with the valve leaking so badly – maybe God knew she didn’t need to be that active yet.
We are thankful for the medical technology that’s available today - that Janna’s heart needs can be monitored and cared for. We thank God for caring for her and giving her good health and strength. We continue to pray for His healing touch. We thank you all for you concern and prayers.
"So let us come boldly to the throne of our gracious God. There we will receive his mercy, and we will find grace to help us when we need it."
Hebrews 4:16
In His name, AJ
I am having a lot of trouble posting pictures and turning them the correct way – you’ll have to turn your head on a few of these. Will add more Christmas ones later and a toofy picture if I can catch one.
A few pictures from Christmas morning;
Well, I got the bow off – it’s a start.
Think it’ll open if I hit it?
Here’s some paper daddy………
I love paper!
Now I’m getting somewhere.
A Glow Worm! Pretty cool, huh?
Playing with one of my new bandanas Grandma and Grandpa got me for Christmas.
I love it!
And I’ll close with a big, healthy smile!
Monday, January 9, 2006
Sorry this is so long this time…………………
I started putting this journal entry together last week. We’ve experienced a big change since then. So I’m adding a paragraph at the end concerning Janna’s cardiology appointment from last Friday. We covet your prayers for our angel. See details in added paragraph below.
I’ve got a lot of catching ‘you’ up to do. Janna visited the ENT at Duke on December 14th. We were blessed with a wonderful Christmas gift there. Once again she passed all hearing screenings and her ears are in great shape. We don’t have to go back. Dr. Hulka referred us to an ENT in Goldsboro in case we ever need one. It was a long day but she was a good girl – she was asleep on my shoulder by the time the Dr. looked into her ears.
Janna got another neat Christmas present – her front bottom left tooth. Well, it didn’t make a full appearance by Christmas but it’s almost all up now. It hasn’t bothered her too bad. We are thankful for Baby Orajel and Tylenol though.
She really enjoyed her first Christmas although it tired her out. Christmas morning she went back to bed soon after she got up. We did a lot of visiting and she got to see her cousins and aunts/uncles and grandparents too of course.
Being a mother of a baby with Trisomy 21 (Down syndrome), I sometimes hear others say that, ‘no, having a child with a disability is not what I would have prayed or hoped for.’ BUT, those who are blessed with these special angels will tell you that it has changed their lives, and that of their family’s, for the better in many ways. You learn so much more about unconditional love, even if you already knew a bit about it. There are many things in our lives that we wouldn’t have asked for or prayed for or hoped for. But once God brings you far enough ahead you can look back and see and understand the good that has come from the things that we didn’t really want. We would not change a thing about Janna. She is perfect in God’s eyes and ours.
I would not have prayed/hoped that my husband would have hit a dog in the middle of the road on the way to work one night a year and a half ago, ruining the radiator in the car. But had he not, he may not have the stress-free and flexible job he has today. Because we took the car to a nearby mechanic, we ran into an old schoolmate of mine and got to talking. Just so happens, he had a job position open and guess who got it?
Joseph (in the Bible) would not have prayed that his brothers would sell him to some thieves where he’d be taken so far from his father and home. Although it was a bad thing, God used it for good and Joseph learned that and realized that when his brothers came back years later needing food due to famine in their own land.
It was a dark day when Christ was beaten and bruised, mocked and tormented, spit upon and pierced, bleeding up on that cross at Calvary. Truly a bad thing, but God meant it for good. He took on the sins of the whole world, facing hell so you nor I would ever have to. No way his mother could understand, at the time, why he had to endure all that.
Having a child with a disability is nothing to compare to the death of Christ and what He did for us – the ultimate sacrifice. But we can learn from all things in our lives, if we chose to.
I can hardly believe that a year has almost gone by. Our baby girl will soon be 1. What a year it has been! I know many do not have a lot of education when it comes to T21 and as learning parents, we have to choose who we educate. Some choose never to learn, some are just not teachable. But if you’ve made it this far into this entry, I feel like you are very teachable.
I pray that some day Janna looks back over all this jibber I’ve written and sees what a miracle she truly is. Did I mean that she would one day read this!!? Yes, I did. Many do not realize the potential of these angels. Years ago, a child with T21 did not get the support they needed and deserved, to live in a loving home, to grow up with their siblings and parents cheering them on. If you had been left alone or put in some home, you would not have developed or accomplished much either. If you had not received the proper health care or the therapy you needed to help you eat or hear or talk or crawl or walk, you would not have done those things too well. Thankfully, things are different. Janna will walk and talk and read and do many things that many don’t expect her to do. True, it may take her a little longer to accomplish these things, but she will get there. Now, I don’t know if she’ll ever drive a car, or live out on her own. We do have high expectations for her but that remains to be seen. But no matter what, she’ll always be perfect to us and God.
Many others with T21 have gone to college. Many are super musicians and artists. Some are married. Some have written books. Yes, many young kids with T21 are attending your everyday classrooms and reading and learning and doing very well – even making the honor roll. Those with disabilities may have delays, but it doesn’t mean that they can’t get there. Next time you see someone with a disability, just remember, they may not have gotten the support they needed and that may be why they can’t do this or that. But because they can’t do this or that doesn’t mean that they can’t get there. We’re all very teachable if we have lots of love and support.
Added paragraph concerning Janna’s cardiology appointment;
We really got some unexpected news last Friday. We were elated that Janna had gained 2 pounds since her last cardiology visit. She has been doing so well. She’s really healthy and strong and eating like a champ. But we were quite surprised when the echocardiogram told a different story. As Dr. Milazzo put it, ‘the echo doesn’t lie.’ Janna’s mitral valve is leaking severly. Blood is backing up into her lungs and this could cause pulmonary hypertension, which is irreversible. He increased her diuretics and blood pressure medicine. Dr. Milazzo has always been very optimistic about Janna overcoming this leaky valve. He/we thought that gaining weight, staying healthy, and taking blood pressure medicine was going to help her get over this. But it seems that over the last weeks the leak has gotten even worse, despite her weight gain, health, and strength. I tell you, Satan can attack, but he can’t even do that well when so many are praying. He may be attacking but God is keeping this child strong and healthy. You would not know how bad things are on the inside by watching her thrive and seeing her so strong and active. The only sign of all this is a little fast breathing at times. Janna will get the victory through Christ – He bore those stripes for her and the many others needing healing. So, Dr. Milazzo is consulting with Janna’s heart surgeon. We are waiting on a phone call. It seems that she may face open-heart surgery again soon. We are praying for healing – for a miracle, we’re praying for another route versus surgery, and preparing ourselves too if God provides that healing by guiding the hands of the surgeon once again. We appreciate your prayers.
Having said that – what I write next will make sense if you’ve had time to read the first part of this entry.
We would not have prayed that Janna would refuse to drink her milk at day-care many weeks ago, resulting in her having to stay at home with daddy 3 days a week and causing him to miss work. This has been going on since before Christmas. But, God knew exactly what He was doing. She did not need to be around other kids and take the chance of getting sick with her valve leaking so badly.
We would not have prayed that Janna hasn’t qualified for Physical Therapy and other therapies yet, although she is somewhat delayed in her development. We are happy she is doing so well but we also want to give her all she needs for her development. We realize that PT may have been too strenuous for her with the valve leaking so badly – maybe God knew she didn’t need to be that active yet.
We are thankful for the medical technology that’s available today - that Janna’s heart needs can be monitored and cared for. We thank God for caring for her and giving her good health and strength. We continue to pray for His healing touch. We thank you all for you concern and prayers.
"So let us come boldly to the throne of our gracious God. There we will receive his mercy, and we will find grace to help us when we need it."
Hebrews 4:16
In His name, AJ
I am having a lot of trouble posting pictures and turning them the correct way – you’ll have to turn your head on a few of these. Will add more Christmas ones later and a toofy picture if I can catch one.
A few pictures from Christmas morning;
Well, I got the bow off – it’s a start.
Think it’ll open if I hit it?
Here’s some paper daddy………
I love paper!
Now I’m getting somewhere.
A Glow Worm daddy! Pretty cool, uh?
Playing with one of my new bandanas Grandma and Grandpa got me for Christmas.
I love it!
And I’ll close with a big, healthy smile!
Tuesday, December 27, 2005
I don’t have pictures to post (yet), I don’t have much to say. We pray you had a wonderful Christmas in your warm homes with kind family and friends – we did.
Janna continues to have a big appetite and we give ALL praise to God for this.
I dedicate this journal entry and poem below to a true hero, Bryan Townsend, Janna’s uncle. We have shared Christmas this year with a TRUE HERO – a quiet, but strong man who fights for us all in the sand of Iraq. A man who has lost weight, lost time with his dear wife and family – time he will never regain again. But yet, time that he feels is important enough to sacrifice for you and for me.
We love you Uncle Bryan and we’re praying for you and we’ll NEVER FORGET what you and your buddies do for us every day. Praying the Lord brings you safely home and thankful for a wonderful Christmas blessed with your presence. Fight on hero……….
“A Different Christmas Poem”
“The embers glowed softly, and in their dim light,
I gazed ‘round the room and I cherished the sight.
My wife was asleep, her head on my chest,
My daughter beside me, angelic in rest.
Outside the snow fell, a blanket of white,
Transforming the yard to a winter delight.
The sparkling lights in the tree I believe,
Completed the magic that was Christmas Eve.
My eyelids were heavy, my breathing was deep,
Secure and surrounded by love I would sleep.
In perfect contentment, or so it would seem.
So I slumbered, perhaps I started to dream,
The sound wasn't loud, and it wasn't too near,
But I opened my eyes when it tickled my ear.
Perhaps just a cough, I didn't quite know,
Then the sure sound of footsteps outside in the snow.
My soul gave a tremble, I struggled to hear,
And I crept to the door just to see who was near.
Standing out in the cold and the dark of the night,
A lone figure stood, his face weary and tight.
A soldier, I puzzled, some twenty years old,
Perhaps a Marine, huddled here in the cold.
Alone in the dark, he looked up and smiled,
Standing watch over me, and my wife and my child.
"What are you doing?" I asked without fear,
"Come in this moment, it's freezing out here!
Put down your pack, brush the snow from your sleeve,
You should be at home on a cold Christmas Eve!"
For barely a moment I saw his eyes shift,
Away from the cold and the snow blown in drifts…
To the window that danced with a warm fire's light
Then he sighed and he said "Its really all right,
I'm out here by choice. I'm here every night."
"It's my duty to stand at the front of the line,
That separates you from the darkest of times.
No one had to ask or beg or implore me,
I'm proud to stand here like my fathers before me.
My Gramps died at Pearl on a day in December," Then
he sighed, "That's a Christmas 'Gram always remembers."
My dad stood his watch in the jungles of 'Nam',
And now it is my turn and so, here I am.
I've not seen my own son in more than a while,
But my wife sends me pictures, he's sure got her smile.
Then he bent and he carefully pulled from his bag,
The red, white, and blue... an American flag.
"I can live through the cold and the being alone,
Away from my family, my house and my home.
I can stand at my post through the rain and the sleet,
I can sleep in a foxhole with little to eat.
I can carry the weight of killing another,
Or lay down my life with my sister and brother…
Who stand at the front against any and all,
To ensure for all time that this flag will not fall."
"So go back inside," he said, "harbor no fright,
Your family is waiting and I'll be all right."
"But isn't there something I can do, at the least,
"Give you money," I asked, "or prepare you a feast?
It seems all too little for all that you've done,
For being away from your wife and your son."
Then his eye welled a tear that held no regret,
"Just tell us you love us, and never forget.
To fight for our rights back at home while we're gone,
To stand your own watch, no matter how long.
For when we come home, either standing or dead,
To know you remember we fought and we bled.
Is payment enough, and with that we will trust,
That we mattered to you as you mattered to us.”
Author Unknown
Tuesday, December 27, 2005
I don’t have pictures to post (yet), I don’t have much to say. We pray that you had a wonderful Christmas in your warm homes with kind family and friends – we did.
Janna continues to have a big appetite and we give ALL praise to God for this.
I dedicate this journal entry and poem below to a true hero, Bryan Townsend, Janna’s uncle. We have shared Christmas this year with a HERO – a quiet, but strong man who fights for us all in the sands of Iraq. A man who has lost weight, lost time with his dear wife and family – time he will never regain again. But yet, time that he feels is important enough to sacrifice for you and for me.
We love you Uncle Bryan and we’re praying for you and we’ll NEVER FORGET what you and your buddies do for us every day. Praying the Lord brings you safely home and thankful for a wonderful Christmas blessed with your presence. Fight on hero………
A Different Christmas Poem
The embers glowed softly, and in their dim light,
I gazed ‘round the room and I cherished the sight.
My wife was asleep, her head on my chest,
My daughter beside me, angelic in rest.
Outside the snow fell, a blanket of white,
Transforming the yard to a winter delight.
The sparkling lights in the tree I believe,
Completed the magic that was Christmas Eve.
My eyelids were heavy, my breathing was deep,
Secure and surrounded by love I would sleep.
In perfect contentment, or so it would seem.
So I slumbered, perhaps I started to dream,
The sound wasn't loud, and it wasn't too near,
But I opened my eyes when it tickled my ear.
Perhaps just a cough, I didn't quite know,
Then the sure sound of footsteps outside in the snow.
My soul gave a tremble, I struggled to hear,
And I crept to the door just to see who was near.
Standing out in the cold and the dark of the night,
A lone figure stood, his face weary and tight.
A soldier, I puzzled, some twenty years old,
Perhaps a Marine, huddled here in the cold.
Alone in the dark, he looked up and smiled,
Standing watch over me, and my wife and my child.
"What are you doing?" I asked without fear,
"Come in this moment, it's freezing out here!
Put down your pack, brush the snow from your sleeve,
You should be at home on a cold Christmas Eve!"
For barely a moment I saw his eyes shift,
Away from the cold and the snow blown in drifts…
To the window that danced with a warm fire's light
Then he sighed and he said "Its really all right,
I'm out here by choice. I'm here every night."
"It's my duty to stand at the front of the line,
That separates you from the darkest of times.
No one had to ask or beg or implore me,
I'm proud to stand here like my fathers before me.
My Gramps died at Pearl on a day in December," Then
he sighed, "That's a Christmas 'Gram always remembers."
My dad stood his watch in the jungles of 'Nam',
And now it is my turn and so, here I am.
I've not seen my own son in more than a while,
But my wife sends me pictures, he's sure got her smile.
Then he bent and he carefully pulled from his bag,
The red, white, and blue... an American flag.
"I can live through the cold and the being alone,
Away from my family, my house and my home.
I can stand at my post through the rain and the sleet,
I can sleep in a foxhole with little to eat.
I can carry the weight of killing another,
Or lay down my life with my sister and brother…
Who stand at the front against any and all,
To ensure for all time that this flag will not fall."
"So go back inside," he said, "harbor no fright,
Your family is waiting and I'll be all right."
"But isn't there something I can do, at the least,
"Give you money," I asked, "or prepare you a feast?
It seems all too little for all that you've done,
For being away from your wife and your son."
Then his eye welled a tear that held no regret,
"Just tell us you love us, and never forget.
To fight for our rights back at home while we're gone,
To stand your own watch, no matter how long.
For when we come home, either standing or dead,
To know you remember we fought and we bled.
Is payment enough, and with that we will trust,
That we mattered to you as you mattered to us.
Wednesday, December 7, 2005
Janna had a cardiology appointment on November 22nd, just before Thanksgiving. Dr. Milazzo said that her mitral valve is leaking no worse – still in the moderate to severe range. He is still optimistic that the Enalapril (blood pressure med) along with weight gain and staying clear of infection will keep her from another heart surgery. He is very pleased with how she acts and looks and with her weight gain (although it was little this time due to the virus she had the weekend prior to her appointment). She has been very active and is drinking more milk than ever now. She is drinking between 25-30 ounces most days and eating cereal and baby food also. We are so happy and give God all the praise for her new appetite. She’s had it for a month or so now and we pray it continues. Dr. Milazzo increased her Enalapril a little. She seems to be a bit more irritable after taking it, since the increase. She’ll adjust again, as before, and he will continue to increase it as she grows.
Janna received a Christmas gift this weekend from our neighbors. She removed the bow from the box and that was about it – good practice though. She now has 2 very sweet 1st Christmas ornaments, one from cousin April (baby in high chair) and one from the Kesseler’s (baby in stroller). She is really enjoying the Christmas Tree lights – daddy put some very active color lights on it for her to see.
Janna heads to the ENT at Duke next week (Wednesday the 14th). This is just a routine check-up. She also has to get her Synagis shot for December next week. She doesn’t visit her cardiologist again until January 6th. We pray that she will be closing in on 16 pounds by then.
Also on the 14th, Aunt Elizabeth, daddy’s sister is coming home for Christmas from Colorado and her husband Bryan is coming in from Iraq for 2 weeks. We are thankful that they can be together for Christmas and that for the first time they can see their niece, Janna, in person. Let’s continue to pray for our soldiers and their families - such a sacrifice they pay for our freedom! Thank you troops for giving of yourselves for all of us back here in the states. We pray that you have a safe and nice Christmas wherever you spend it and that you will all be able to come home soon.
HAPPY BIRTHDAY JESUS! MERRY CHRISTMAS EVERYONE and God bless you!
May we always be ready and willing to praise Him, share Him, and leave with Him.
'Twas the night before Jesus came and all through the house,
Not a creature was praying, not one in the house.
Their Bibles were lain on the shelf without care
In hope that Jesus would not come there.
The children were dressing to crawl into bed,
Not once ever kneeling or bowing a head.
And Mom in her rocker with baby on her lap
Was watching the Late Show while I took a Nap.
When out of the East there arose such a clatter
I sprang to my feet to see what was the matter.
Away to the window I flew like a flash
Tore open the shutters and threw up the sash!
When what to my wondering eyes should appear
But angels proclaiming that Jesus was here.
With a light like the sun sending forth a bright ray
I knew in a moment this must be THE DAY!
The light of His face made me cover my head
It was Jesus! Returning just like He said.
And though I possessed worldly wisdom and wealth,
I cried when I saw Him in spite of myself.
In the Book of Life which He held in His hand
Was written the name of every saved man.
He spoke not a word as he searched for my name
When He said, "It's not here" my head hung in shame.
The people whose names had been written with love
He gathered to take to His Father above.
With those who were read He rose without a sound
While all the rest were left standing around.
I fell to my knees, but it was too late,
I had waited too long and thus sealed my fate.
I stood and I cried as they rose out of sight,
Oh if only we had been ready tonight.
In the words of this poem the meaning is clear,
The coming of Jesus is drawing near.
There's only one life and when comes the last call
We'll find that the Bible was true after all!
(Author Unknown)
"This is Christmas: not the tinsel, not the giving and receiving, not even the carols, but the humble heart that receives anew the wondrous gift, the Christ." - Frank McKibben
"And what a difference between our sin and God's generous gift of forgiveness. For this one man, Adam, brought death to many through his sin. But this other man, Jesus Christ, brought forgiveness to many through God's bountiful gift. And the result of God's gracious gift is very different from the result of that one man's sin. For Adam's sin led to condemnation, but we have the free gift of being accepted by God, even though we are guilty of many sins. The sin of this one man, Adam, caused death to rule over us, but all who receive God's wonderful, gracious gift of righteousness will live in triumph over sin and death through this one man, Jesus Christ." Romans 5:15-17
No, I didn’t forget the pictures – enjoy…………………………
Me and my great-grandma at Thanksgiving
Our Happy, Big Appetite Girl!
Our Silly Girl……………
Merry Christmas suit pictures
and daddy’s favorite;
MERRY CHRISTMAS and HAPPY NEW YEAR!
Monday, November 21, 2005
Sorry it has taken me awhile to get back here and update you on Janna. She has really picked up on her eating and drinking of late and almost made it up to 15 pounds. Last Friday I took her in for her monthly Synagis Shot and also the second part of her Flu Shot. She cried for about 15 seconds and went back to smiling and clapping for everyone. She weighed 14 lbs. 14 oz. My sister, Chanda, went with us to get out a little. She is doing much better but is still in some pain/discomfort at times (from Gall Bladder surgery/bile leakage/Pancreatitis etc.). Her drainage tube was removed last week and she will return to Greenville in a few weeks to have the stint removed from her bile duct area. We praise God for looking out for her during this illness – to think how much worse it could’ve been with all that bile leaking on the inside for 2 weeks. She is very blessed that things didn’t get any worse on the inside. The Dr. from Greenville did not expect to see organs and things so inflamed and irritated inside of her. He commented recently that she is getting back to looking more like a human again.
After Janna’s shots last Friday, she slept a little more than usual for her afternoon nap. By Saturday morning, she was throwing up her milk first thing and very tired and inactive. She continued this during the morning, so we called the Peds. The nurse wanted us to come in right away. They do not think it was from the Flu shot but rather a stomach virus. Dr Zeimmer also checked Janna’s urine and it was fine at first site and also for the culture results were fine the next day. We were very glad to hear that. So, we, along with G-ma and G-pa Best, all camped out at the Peds, feeding our baby bird Pedialyte through a syringe, praying against a hospital trip for IVs/Fluids. It worked! Although she continued to throw-up several times that day, we got enough in her to get her through. We left on terms that we would take her straight to Wake Med if she wasn’t able to keep a good bit of the Pedialyte down and/or if she got worse. She never ran a fever. She slept all night and was starving Sunday morning, but we had to pace her. She kept down 4.5 oz. of Pedialyte and 5 oz. of formula prior to her re-check at the Peds that morning. Dr. Zeimmer was very pleased. She was back to her perky self and looking much better than she did on Saturday. She did lose her lunch Sunday but overall did well. She had lost 5 oz. Sunday, back down to 14 lbs. 9 oz. but we are praying that she will get that big appetite back again soon. She didn’t take in a whole lot Sunday but we know this must be gradual since her tummy is still a bit weak.
Please help us pray that she can start back gaining weight again soon.
A couple of weekends ago, Janna went to Fayetteville to stay with MeMa and PaPa Sutton. Mommy and daddy needed a break although it was hard to see her ride off in her car seat with them. It all went well, she slept well and ate well. She did talk a little bit too loud in church, but overall she was a good girl. And she was a little bit glad to see mommy and daddy when we picked her up that Sunday.
Here’s some pictures of her that day;
First site of daddy when we picked her up from Fayetteville.
Now she spies mommy with the camera.
The Good Girl.
Changing out of my Sunday clothes……and being a little silly!
Daddy picked me up – do you think she loves him?!
Playing on the floor at MeMa and PaPa’s and still grinning.
I’m still practicing eating with my spoon – don’t think mommy gave me chocolate pudding though.
It’s prunes! Yum!
A little proud of myself…………
And daddy wanted everyone to see that I do NOT always have a smile on – LOL!
I’m really enjoying playing in the leaves on the weekends!
And eating them too! Yuk!
My good dog Jack!
Still loving my swing………………
And of course – recent smiles……………excuse the scratch on my nose in some of these.
BIG, BIG Smiles…………
This is the outfit I was suppose to wear home from the hospital back in February when I was born.
It swallowed me then. It’s a little too short, but it fits well now.
And these 2 just because………
During this Thanksgiving season, let’s focus on these verses;
Let the peace of God rule in your hearts, . . . and be thankful. —Colossians 3:15
And my favorite;
And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me.
2 Corinthians 12:9
Many times in life, we do all that we know to do and yet things don’t seem to move fast enough for us. Things can be uncertain, even when God’s hand is on our lives. Sometimes it gets hard to keep stating those words, those truths we know so well. The more time it takes for the victory to come, the more time Satan has to tempt us with doubt. Our choir at church often sings a song called, “He’s ALL that I Need”. Our hope is in Him, no matter the circumstances around us, no matter how many set-backs. While waiting on the Lord to answer our prayers, to send victory, or even to give us strength to keep on keeping on, we have to remember that He is ALL that we need. His grace is sufficient – thankfully He is strong for us, even when we are so weak and unsure. His power will help us to overcome.
A few other things to remember;
1Peter 5:7 – He cares for us.
Jeremiah 29:11 – He has a plan for us – to give us a hope and a future.
Deuteronomy 31:8 – He promises NEVER to leave us.
1 John 5:14-15 – He hears and answers our prayers.
Psalm 37:23 – He will order our steps.
Romans 8:28 – He promises to work it ALL out for our good, no matter the circumstances.
We pray that you and your family have a wonderful Thanksgiving!
Be strong, in the Word. Stand on His promises and know that HE IS ENOUGH! AJ
Monday, November 7, 2005 1:14 PM CST
Here we go again.....................Janna started throwing up again earlier in the week. The latest antibiotic got into her system and she just couldn’t tolerate it. So, we stopped giving it to her as well. She didn’t drink or eat well this week either. But, at her 9 month well-baby check Thursday, she did weigh 14lb. 9oz. At her cardiology appointment October 28th, she weighed 14lb. 5oz. So she’s moved a little although she pretty much maintained during October because of the antibiotics. Fortunately Janna by-passed any vaccines for her 9 month check-up. She had already received what she needed the day she came home from Duke after her heart surgery so there were no 9 month vaccines necessary. Dr. Tayloe did put her on a weak dose of Amoxil (antibiotic) that shouldn't bother her tummy. Everything else checked out good and she enjoyed playing with the paper of course.
Cardiology appointment update; we are happy and very thankful to say that things have not gotten any worse for Janna’s heart (valve leaking/heart enlargement). Dr. Milazzo really feels that if we can keep her from infection and get her growing well, that she will NOT face surgery. This first year after surgery is critical. We see him again this month on the 22nd. Again, Janna got to play with the paper and had a ball. She also was very good for the echo. Here are a few pictures;
Boy this sure is FUN!
Sitting nice with daddy while Dr. Milazzo listens to my heart.
Janna ‘helping’ the echo technician with the camera probe.
Our country girl in her overalls and brogans.
Janna had an EI appointment the same day as her cardiology appointment. Miss Maura came out to check on Janna and set new goals, now that she’s 9 months old. One of the goals we set for Janna was for her to start feeding herself with a spoon and picking up small pieces of food better. We had just bought one of those easy to hold spoons in Raleigh that morning after her cardiology appointment. Janna showed Maura how she could sit up and play with her toys and then she was too tired to do much more, so she went down for a nap. Later when it was supper time, we decided to see how Janna could do with her new spoon. She got a grip on it and straight to the mouth it went, just as everything does. She knows to put it in the food but she just doesn’t have the hang of scooping much yet, but we’ll keep working on it. Here’s some pictures for Miss Maura;
And by the way - CONGRATULATIONS to Maura as she is getting married here in the next few days!
This job requires TWO bibs!
Okay, I’ll let you feed me momma.
Janna picking up a Gerber melt-a-way to eat.
Recent smiles;
Night, Night Smile
Okay, enough smiling, I’m ready to sleep now.
Our sweet little rabbit - don’t be deceived, we wouldn’t dare cook her!
Aunt Gay gave Janna this cute bunny suit and we didn’t know if it would
fit, but it does and we didn’t know if she’d fit in the pot, but she did!
She was much better satisfied when we gave her the carrot to eat - LOL.
Sitting on Mr. William Johnson’s cool tractor with my overalls on;
Well, it looks like we might get some rain..........
Playing with the grass.
I love being outside!
Big Yawn! "Been farming TOO long!"
At last, another one of God’s beautiful creations.
Daddy planted some sunflowers and they bloomed about a month ago.
Here’s a really nice picture of one.
Matthew 6:28-34
28"And why do you worry about clothes? See how the lilies of the field grow. They do not labor or spin. 29Yet I tell you that not even Solomon in all his splendor was dressed like one of these. 30If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you, O you of little faith? 31So do not worry, saying, 'What shall we eat?' or 'What shall we drink?' or 'What shall we wear?' 32For the pagans run after all these things, and your heavenly Father knows that you need them. 33But seek first his kingdom and his righteousness, and all these things will be given to you as well. 34Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.
Sometimes it’s hard not to worry about Janna - is she going to eat today, is she going to feel well, is she going to have a good day at day-care, is she going to get a good report at the doctor?
One thing is for sure - God is going to let her smile no matter what. I’m trying to remember when I see that smile that I need not worry. That with Him, she is going to overcome. Victory is in sight, because of Him - He’s already made the way, I just have to take hold of that and know He will take care of her.
Let’s seek Him first and then everything else will be taken care of. No need in worrying about things or the future - He’s already got it ALL figured out. Trust Him and be content with what you have, with how things are. He will make a way. He will always be for us and be here for us.
Hebrews 13:5
Let your conversation be without covetousness; and be content with such things as you have: for he hath said, I will never leave thee, nor forsake thee.
Thankfully content, AJ
Thursday, October 27, 2005
Thanks to everyone for praying for Janna. She is doing much better off of the Ceptra (antibiotic). She quit spitting her milk out, she quit throwing up, and she’s eating like a champ again – taking in about 18-20 ounces a day and eating three meals. She started a new antibiotic (Furadantin) over the weekend. She threw it up two mornings in a row. So, mommy took the suggestion of a co-worker and started giving it to her, without her other medicines, at bedtime. She has kept it down for 3 nights now and is still eating well.
I’d also like to thank you for praying for my sister who had emergency gall bladder surgery over the weekend. Nothing was found yesterday when she returned to the hospital in severe pain. They think she just needed to have a BM. All the pain medicine has constipated her and so they have taken means to keep things moving. Please pray that she will heal and be well enough to return to work on schedule (2 weeks from surgery). We are so thankful they figured out that she needed it removed as she's had trouble eating/throwing up for a few years.
We head to Janna’s cardiologist in the morning. We’re hoping for 15 lbs. Since she hasn’t eaten well on the recent antibiotic we know she may not have gained a whole lot this last month. But, we know what God can do and we’re always eager to see the reading on that digital scale in Raleigh.
Just a few pictures to share since the last update – more smiles and some birthday pictures. Janna had a good time at her first cousin’s (Tara) birthday party last Saturday. Tara turned 7 on Sunday. Tara has always been known as Pumpkin (thus her cake below), her sister, Caroline, is called Peanut. And now, Janna is Sweet Pea. Three sweet cousins!
A funny, bubbly smile.
An okay smile.
A BIG, BIG Smile, although I often lose my short arms in this cool jumpster Justin’s letting me use.
A “I’m finally growing out of my long-johns” Smile
A “I’m not gonna” Smile.”
A little almost smile.
The Birthday Girl (Tara) – a smart girl, always gotta book in hand.
Opening presents as UNC finally wins a football game in the background!
The Pumpkin Cake – it was delicious!
As all things are from the kitchen of Carla Best!
Caroline (Peanut) bobbed her apple right up by hand and dug in!
And all had fun trying to pull/push Uncle Andy/daddy through THE WALL!
Janna at the birthday party looking up at Grandma Best as if to say,
“Can you believe all the youngin’s running around this house!?” 
From earlier in the summer – Pumpkin, Peanut, and Sweet Pea!
Brrrrrrr, it’s finally COLD enough for warm, furry jammies!
Janna checking her watch: “Okay now, it’s going on 7pm. Is someone gonna put me to bed?”
I’ll leave you with these thoughts and verses;
Be joyful in hope, patient in affliction, faithful in prayer. Romans12:12
For the word of God is living and active. Sharper than any double-edged sword, it penetrates even to dividing soul and spirit, joints and marrow; it judges the thoughts and attitudes of the heart. Hebrews 4:12
In Romans, Paul is telling us that we have a lot of work to do! Are you joyful in your hope – or where exactly is your hope? Are you patient when trials come? Have you talked to God lately? He doesn’t care what you sound like when you pray, he already knows your heart. He just wants you to talk to Him.
And Hebrews – Wow! What a mirror! I think sometimes we avoid the Word, because it is alive and such a mirror, showing us how much we are lacking. But thankfully HE has made a way and our undeserving ways and failures are made acceptable through His son. Lord, help me not to fail today. Keep me in your Word, in your Faith.
Be joyful, continue in prayer, and stay in the Word, AJ
Saturday, November 5, 2005
Here we go again.....................Janna started throwing up again earlier in the week. The latest antibiotic got into her system and she just couldn’t tolerate it. So, we stopped giving it to her as well. She didn’t drink or eat well this week either. But, at her 9 month well baby check Thursday, she did weigh 14lb. 9oz. At her cardiology appointment October 28th, she weighed 14lb. 5oz. So she’s moved a little although she pretty much maintained during October because of the antibiotics. Fortunately Janna by-passed any vaccines for her 9 month check-up. She had already received what she needed the day she came home from Duke after her heart surgery so there were no 9 month vaccines necessary. Dr. Tayloe did put her on a weak dose of Amoxil (antibiotic) that shouldn't bother her tummy. Everything else checked out good and she enjoyed playing with the paper of course.
Cardiology appointment update; we are happy and very thankful to say that things have not gotten any worse for Janna’s heart (valve leaking/heart enlargement). Dr. Milazzo really feels that if we can keep her from infection and get her growing well, that she will NOT face surgery. This first year after surgery is critical. We see him again this month on the 22nd. Again, Janna got to play with the paper and had a ball. She also was very good for the echo. Here are a few pictures;
Boy this sure is FUN!
Sitting nice with daddy while Dr. Milazzo listens to my heart.
Janna ‘helping’ the echo technician with the camera probe.
Our country girl in her overalls and brogans.
Janna had an EI appointment the same day as her cardiology appointment. Miss Maura came out to check on Janna and set new goals, now that she’s 9 months old. One of the goals we set for Janna was to start feeding herself with a spoon and picking up small pieces of food better. We had just bought one of those easy to hold spoons in Raleigh that morning after her cardiology appointment. Janna showed Maura how she could sit up and play with her toys and then she was too tired to do much more, so she went down for a nap. Later when it was supper time, we decided to see how Janna could do with her new spoon. She got a grip on it and straight to the mouth it went, just as everything does. She knows to put it in the food but she just doesn’t have the hang of scooping much yet, but we’ll keep working on it. Here’s some pictures for Miss Maura;
And by the way - CONGRATULATIONS to Maura as she is getting married here in the next few days!
This job requires TWO bibs!
Okay, I’ll let you feed me momma.
Janna picking up a Gerber melt-a-way to eat.
Recent smiles;
Night, Night Smile
Okay, enough smiling, I’m ready to sleep now.
Our sweet little rabbit - don’t be deceived, we wouldn’t dare cook her!
Aunt Gay gave Janna this cute bunny suit and we didn’t know if it would
fit, but it does and we didn’t know if she’d fit in the pot, but she did!
She was much better satisfied when we gave her the carrot to eat - LOL.
Sitting on Mr. William Johnson’s cool tractor with my overalls on;
Well, it looks like we might get some rain..........
Playing with the grass.
I love being outside!
Big Yawn! "Been farming TOO long!"
At last, another one of God’s beautiful creations.
Daddy planted some sunflowers and they bloomed about a month ago.
Here’s a really nice picture of one.
Matthew 6:28-34
28"And why do you worry about clothes? See how the lilies of the field grow. They do not labor or spin. 29Yet I tell you that not even Solomon in all his splendor was dressed like one of these. 30If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you, O you of little faith? 31So do not worry, saying, 'What shall we eat?' or 'What shall we drink?' or 'What shall we wear?' 32For the pagans run after all these things, and your heavenly Father knows that you need them. 33But seek first his kingdom and his righteousness, and all these things will be given to you as well. 34Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.
Sometimes it’s hard not to worry about Janna - is she going to eat today, is she going to feel well, is she going to have a good day at day-care, is she going to get a good report at the doctor?
One thing is for sure - God is going to let her smile no matter what. I’m trying to remember when I see that smile that I need not worry. That with Him, she is going to overcome. Victory is in sight, because of Him - He’s already made the way, I just have to take hold of that and know He will take care of her.
Let’s seek Him first and then everything else will be taken care of. No need in worrying about things or the future - He’s already got it ALL figured out. Trust Him and be content with what you have, with how things are. He will make a way. He will always be for us and be here for us.
Hebrews 13:5
Let your conversation be without covetousness; and be content with such things as you have: for he hath said, I will never leave thee, nor forsake thee.
Thankfully content, AJ
Thursday, October 27, 2005
Thanks to everyone for praying for Janna. She is doing much better off of the Ceptra (antibiotic). She quit spitting her milk out, she quit throwing up, and she’s eating like a champ again – taking in about 18-20 ounces a day and eating three meals. She started a new antibiotic (Furadantin) over the weekend. She threw it up two mornings in a row. So, mommy took the suggestion of a co-worker and started giving it to her, without her other medicines, at bedtime. She has kept it down for 3 nights now and is still eating well.
I’d also like to thank you for praying for my sister who had emergency gall bladder surgery over the weekend. Nothing was found yesterday when she returned to the hospital in severe pain. They think she just needed to have a BM. All the pain medicine has constipated her and so they have taken means to keep things moving. Please pray that she will heal and be well enough to return to work on schedule (2 weeks from surgery). We are so thankful they figured out that she needed it removed as she's had trouble eating/throwing up for a few years.
We head to Janna’s cardiologist in the morning. We’re hoping for 15 lbs. Since she hasn’t eaten well on the recent antibiotic we know she may not have gained a whole lot this last month. But, we know what God can do and we’re always eager to see the reading on that digital scale in Raleigh.
Just a few pictures to share since the last update – more smiles and some birthday pictures. Janna had a good time at her first cousin’s (Tara) birthday party last Saturday. Tara turned 7 on Sunday. Tara has always been known as Pumpkin (thus her cake below), her sister, Caroline, is called Peanut. And now, Janna is Sweet Pea. Three sweet cousins!
A funny, bubbly smile.
An okay smile.
A BIG, BIG Smile, although I often lose my short arms in this cool jumpster Justin’s letting me use.
A “I’m finally growing out of my long-johns” Smile A “I’m not gonna” Smile.”
A little almost smile.
The Birthday Girl (Tara) – a smart girl, always gotta book in hand.
Opening presents as UNC finally wins a football game in the background!
The Pumpkin Cake – it was delicious!
As all things are from the kitchen of Carla Best!
Caroline (Peanut) bobbed her apple right up by hand and dug in!
And all had fun trying to pull/push Uncle Andy/daddy through THE WALL!
Janna at the birthday party looking up at Grandma Best as if to say,
“Can you believe all the youngin’s running around this house!?”
From earlier in the summer – Pumpkin, Peanut, and Sweet Pea!
Brrrrrrr, it’s finally COLD enough for warm, furry jammies!
Janna checking her watch: “Okay now, it’s going on 7pm. Is someone gonna put me to bed?”
I’ll leave you with these thoughts and verses;
Be joyful in hope, patient in affliction, faithful in prayer. Romans12:12
For the word of God is living and active. Sharper than any double-edged sword, it penetrates even to dividing soul and spirit, joints and marrow; it judges the thoughts and attitudes of the heart. Hebrews 4:12
In Romans, Paul is telling us that we have a lot of work to do! Are you joyful in your hope – or where exactly is your hope? Are you patient when trials come? Have you talked to God lately? He doesn’t care what you sound like when you pray, he already knows your heart. He just wants you to talk to Him.
And Hebrews – Wow! What a mirror! I think sometimes we avoid the Word, because it is alive and such a mirror, showing us how much we are lacking. But thankfully HE has made a way and our undeserving ways and failures are made acceptable through His son. Lord, help me not to fail today. Keep me in your Word, in your Faith.
Be joyful, continue in prayer, and stay in the Word, AJ
Thursday, October 20, 2005
We have good days and we have tough days, but thank goodness the Lord is with us EVERY day. After Janna improved from her tiredness, things worsened for her tummy. It all started a few days after starting the new antibiotic, Ceptra (preventive antibiotic for UTIs). We really feel that this antibiotic is causing her trouble. She is not drinking much at all - some days only about 10 ounces. She isn’t even eating well and she normally loves to eat by spoon. She started this thing recently where she’ll spit her milk out after she’s worked so hard to pull it in (she’s playing with her lips – not spitting up, or maybe it’s a measure for taking a break – a breath, since she’s short on those, especially while drinking?). It’s very frustrating to feed her at times.
We know it’s hard for her to drink as she is hassling/breathing hard much of the time. When she’s drinking, her forehead gets clammy sometimes and she tires, much like she did before her heart surgery in June. We know her heart issues could be causing the reflux to worsen but what she has done over the last 5 days seems different. She has chugged at least one meal every day for the last 5. We feel the antibiotic could be making her sick. So, once again, mommy is acting as the doctor and refusing to give her any more Ceptra. They may want to put her on another kind of antibiotic for UTI preventive measures and we are waiting to hear back from the doctor on this. But we have to figure out what’s causing her tummy to hurt (you can hear it turning at times) and this sickness, not wanting to eat, etc. We’re starting with taking this antibiotic away. Also, we asked about increasing her Prilosec for reflux since this dosage hasn’t been changed in awhile and she has gained some weight since it was first prescribed.
Me Ma and Pa Pa Sutton took Janna in for her first Synagis shot of the season Monday. She also got a flu shot. Synagis is the name brand of the injection used to fight against the highly contagious RSV (Respiratory syncytial virus). Approximately two thirds of all infants are infected with RSV during the first year of life and almost 100 percent are infected by the age of 2. Most of these RSV infections cause minor upper respiratory illness and cold-like symptoms. However, in certain high-risk pediatric patients, RSV infection may cause serious lower respiratory tract disease. It has been estimated in some US communities that between 50 and 80 percent of bronchiolitis hospitalizations from November through April are due to RSV disease. Nationwide, it has been estimated that RSV infection causes up to 125,000 hospitalizations annually. Transmission can be prevented by frequent hand washing by parents and healthcare providers, isolating infants from people with upper respiratory infections, and avoiding secondary tobacco smoke, crowds, and young siblings during the RSV season.
Now you know one of the reasons why we kept this child in the house for the first 4 months of her life. These injections are mainly for infants born prematurely or those with chronic heart or lung disease. Janna did really well with her shots – only cried a little afterwards and was on to happier things like playing Patty Cake. She will get a Synagis shot every month from now through April to help fight against RSV.
Okay – on to less complex things like her dedication, smiling, and sitting pictures that I promised.
We finally had Janna’s dedication at church on October 9th. She did really well and was so sweet in the beautiful gown that Mrs. Elaine Porter hand-made for her. Brother P did a wonderful job with her dedication service and many of Janna’s extended family were able to attend, including her great- grandmomma Westbrook and also her day-care provider, Mrs. Susan and Granny (Susan’s mother). Here are a few pictures of her in the gown. I couldn’t get her to smile much – I think she was hot. You know, October in NC is not always that cool, especially for long gowns. Please excuse that her slip kept rolling up under the gown – what 8 month old can wear a slip properly!?
She enjoyed trying to eat the gown and ribbons though; 
And I did get a few little smiles.
Here are the sitting pictures and others;
Being outside is FUN – I’ve never seen grass this close up before!
She’s steady for quite awhile now, but occasionally she’ll crash!
Doing my push-ups.
Sittin’ in my Radio Flyer that Aunt Elaine and family gave me before I was even born.
I really love swinging!
and the gnats love me!
This is my dog, Jack. He is the same age as I am. He showed up
one day just before my heart surgery and daddy and I talked mommy
into keeping him. He’s a good boy!
Recent SMILES;
Justin Tart always passes on the coolest things to me – a Tigger outfit.
Ever feel like smiling THIS BIG?
Last Friday night we were getting ready to leave for Aunt Pam’s
birthday party. Janna was on her play mat and tired. I threw her
a bandana and she wrapped it over her head to hide the light from her
eyes and when we got ready to leave, we found her asleep like this;
Here are the recent pictures of Janna playing and getting tired.
Okay, I’m almost finished posting pictures – sorry to bombard you.
Thought you might want to end with a big milky kiss!
Thanks again for praying for our angel!
Heard from Dr. Tayloe today and he agreed to stop the Ceptra as it seems to be bothering her tummy. We will start with another antibiotic in a few days. He also told me how to dose her Prilosec since she is now 14 lbs. and 5 oz. as of Monday this week. Please help us pray that she will start back eating/drinking better again and of course that her mitral valve will STOP leaking. God bless you all, AJ
Wednesday, October 19, 2005
We have good days and we have tough days, but thank goodness the Lord is with us EVERY day. After Janna improved from her tiredness, things worsened for her tummy. It all started a few days after starting the new antibiotic, Ceptra (preventive antibiotic for UTIs). We really feel that this antibiotic is causing her trouble. She is not drinking much at all - some days only about 10 ounces. She isn’t even eating well and she normally loves to eat by spoon. She started this thing recently where she’ll spit her milk out after she’s worked so hard to pull it in (she’s playing with her lips – not spitting up, or maybe it’s a measure for taking a break – a breath, since she’s short on those, especially while drinking?). It’s very frustrating to feed her at times.
We know it’s hard for her to drink as she is hassling/breathing hard much of the time. When she’s drinking, her forehead gets clammy sometimes and she tires, much like she did before her heart surgery in June. We know her heart issues could be causing the reflux to worsen but what she has done over the last 5 days seems different. She has chugged at least one meal every day for the last 5. We feel the antibiotic could be making her sick. So, once again, mommy is acting as the doctor and refusing to give her any more Ceptra. They may want to put her on another kind of antibiotic for UTI preventive measures and we are waiting to hear back from the doctor on this. But we have to figure out what’s causing her tummy to hurt (you can hear it turning at times) and this sickness, not wanting to eat, etc. We’re starting with taking this antibiotic away. Also, we asked about increasing her Prilosec for reflux since this dosage hasn’t been changed in awhile and she has gained some weight since it was first prescribed.
Me Ma and Pa Pa Sutton took Janna in for her first Synagis shot of the season Monday. She also got a flu shot. Synagis is the name brand of the injection used to fight against the highly contagious RSV (Respiratory syncytial virus). Approximately two thirds of all infants are infected with RSV during the first year of life and almost 100 re infected by the age of 2. Most of these RSV infections cause minor upper respiratory illness and cold-like symptoms. However, in certain high-risk pediatric patients, RSV infection may cause serious lower respiratory tract disease. It has been estimated in some US communities that between 50 nd 80 f bronchiolitis hospitalizations from November through April are due to RSV disease. Nationwide, it has been estimated that RSV infection causes up to 125,000 hospitalizations annually. Transmission can be prevented by frequent hand washing by parents and healthcare providers, isolating infants from people with upper respiratory infections, and avoiding secondary tobacco smoke, crowds, and young siblings during the RSV season.
Now you know one of the reasons why we kept this child in the house for the first 4 months of her life. These injections are mainly for infants born prematurely or those with chronic heart or lung disease. Janna did really well with her shots – only cried a little afterwards and was on to happier things like playing Patty Cake. She will get a Synagis shot every month from now through April to help fight against RSV.
Okay – on to less complex things like her dedication, smiling, and sitting pictures that I promised.
We finally had Janna’s dedication at church on October 9th. She did really well and was so sweet in the beautiful gown that Mrs. Elaine Porter hand-made for her. Brother P did a wonderful job with her dedication service and many of Janna’s extended family were able to attend, including her great- grandmomma Westbrook and also her day-care provider, Mrs. Susan and Granny (Susan’s mother). Here are a few pictures of her in the gown. I couldn’t get her to smile much – I think she was hot. You know, October in NC is not always that cool, especially for long gowns. Please excuse that her slip kept rolling up under the gown – what 8 month old can wear a slip properly!?
She enjoyed trying to eat the gown and ribbons though;
And I did get a few little smiles.
Here are the sitting pictures and others;
Being outside is FUN – I’ve never seen grass this close up before!
She’s steady for quite awhile now, but occasionally she’ll crash!
Doing my push-ups.
Sittin’ in my Radio Flyer that Aunt Elaine and family gave me before I was even born.
I really love swinging!
and the gnats love me!
This is my dog, Jack. He is the same age as I am. He showed up
one day just before my heart surgery and daddy and I talked mommy
into keeping him. He’s a good boy!
Recent SMILES;
Justin Tart always passes on the coolest things to me – a Tigger outfit.
Ever feel like smiling THIS BIG?
Last Friday night we were getting ready to leave for Aunt Pam’s
birthday party. Janna was on her play mat and tired. I threw her
a bandana and she wrapped it over her head to hide the light from her
eyes and when we got ready to leave, we found her asleep like this;
Here are the recent pictures of Janna playing and getting tired.
Okay, I’m almost finished posting pictures – sorry to bombard you.
Thought you might want to end with a big milky kiss!
Thanks again for praying for our angel!
Heard from Dr. Tayloe today and he agreed to stop the Ceptra as it seems to be bothering her tummy. We will start with another antibiotic in a few days. He also told me how to dose her Prilosec since she is now 14 lbs. and 5 oz. as of Monday this week. Please help us pray that she will start back eating/drinking better again and of course that her mitral valve will STOP leaking. God bless you all, AJ
Thursday, October 13, 2005
JANNA HAS IMPROVED! Since the increased blood pressure medicine, she has been very tired and sleepy. She’s been doing her routine 11/12 hour nights as well as a couple of day naps at 1-2 hours each. She would also be playing and stop, put her head down with fingers in her mouth (something she does when she’s sleepy) and rest awhile and then go again. Since her cardiologist was out of town, I spoke with another Duke Pediatric Cardiologist this past weekend. I gathered from him that maybe the increased medicine could be causing her blood pressure to be too low, in turn making her extra tired. He suggested we watch her closely and wait to see her cardiologist, unless she got worse of course and then we could bring her to Duke. So, mommy (since she IS the doctor as daddy says) decreased her blood pressure medicine Saturday. She had been getting 1ml twice a day and it was recently increased to 2mls twice a day. I started giving her 1.5mls twice a day and also decreased the amount of Clarinex (allergy med) we are giving her as the Pediatrician last week suggested the Clarinex could possibly be making her tired/irritable. Besides most of my family, and myself, cannot take full doses of anything – we function better on lower doses of medicines when needed. Janna has had a good week at day-care and at home. She seems to be feeling better and is not as tired all the time. We are so happy for her – she’s getting back to her old self. In talking to others, I understand that it can wipe you out when your blood pressure medicine has to be adjusted. Also, Janna has started eating more – 1 bowl of cereal with vegs/fruit is no longer enough. She has to have 2 bowls at most meals and also yogurt. We just started her on yogurt a week or so ago – she loves it! She still is not drinking all the milk we’d like for her drink, but she does her best. We are still praying about this leaky valve. We know God can take care of it and we are very thankful for her recent improvement. Lord willing, we will not see the cardiologist until the 28th of this month as planned. Thanks to all those who have been praying! We truly appreciate the prayers, concern, and encouragement and we know that God is hearing and helping this little one along.
Oh, I almost forgot! Janna started sitting alone for about 5 minutes at the time this weekend also. She’s strong enough – she’s just too busy to sit still most times. As long as her attention is on something with her head up like looking at a video or person or tall toy, she can do it. Otherwise she’s too busy to sit and has to try and go somewhere. It’s really cute when she grabs her toes and just sits there smiling at you. I’ve got to get a picture of it – don’t know what I was thinking – will take one soon to post.
Please sign Janna’s guest book if you have time. We’d love to know you stopped by to check on her. THANKS!
Closing with the Word,
Ephesians 6:10, 11
10Finally, my brethren, be strong in the Lord, and in the power of his might.
11Put on the whole armour of God, that ye may be able to stand against the wiles of the devil.
Don’t forget to dress in His armour – it’s a tough fight around here, AJ
A few more recent pictures and smiles – (some are from a couple weeks ago);
Doing my sit-ups.
This big toe sure is good…………
Hey, listen up! There’s some smiles below……slobbery as they are.
From a couple weeks ago.
Tuesday, October 4, 2005
I’ve been putting off this journal entry – just because I don’t like running this all over in my mind. Trying to stay focused on things above and not the circumstances around us. We know God already sees the picture ahead and He is in full control. We are really trying to look with ‘forever’ eyes and know that He will see Janna through whatever lies ahead. We didn’t get the best report Friday at the cardiologist, BUT we know things could be a lot worse. Janna’s mitral valve is leaking pretty bad – her heart has already started to dilate/enlarge. Also we found a discrepancy in her blood pressure medicine – it has been filled as 1mg/ml, instead of 5mg/ml as it should have been. So, Dr. Milazzo increased the amount that we give her daily and now maybe this correct dosage will better help with the leaky valve. Janna had a good time though, playing with the paper! She also was very good for the echo once again, watching a Baby Einstein video and very curious of her heart sounds coming from the echo equipment. She didn't eat the gel this time! That made momma very happy. Lindsey said that she would have a good Friday if everyone else was that good for her the rest of the day. Here are a few pictures of the paper fun;
We knew from the beginning that this valve could pose a problem for her. We pray that as she grows this WILL get better. After all, her daddy thrived 30 years before his leaking pulmonic valve was replaced. We are trusting God to take care of this angel that He sent. We know He will see her through no matter what. She still shows very little signs of this problem, on the outside. She has been breathing fast/heavy at times but we’re not sure how much of this is from the leaky valve and how much is from the fall allergies she’s battling. She’s also sleeping more lately and she rather eat from the spoon any day than pull on that bottle and drink. Yesterday was her last day on Keflex for the UTI. She will now start Septra for awhile. Please pray that she will not be allergic to this sulfa drug as I am – we will be watching her very closely.
The good news from Friday; Janna weighed 14 pounds! Yipeee! (We really like the digital scale in Raleigh). She was also a little over 26 inches long and her head circumference was 41 cm. All good numbers. We are very thankful for her growth. Spoke with her cardiologist yesterday as he wanted a call concerning how she was doing on the increased blood pressure medicine. He decided to put her back on the diuretics for awhile longer – this should help with her breathing. We see him again on the 28th.
More good news! Janna’s recent blood work showed no problems with her thyroid – her number was well within the typical range. All praises to God!
Please join us in praying for this sweet girl, that she will be strong enough to drink well and continue to grow, that this latest UTI will clear and never return, that her mitral valve will stop leaking, and that she will continue to smile as she always does, even when she’s not feeling her best. In His name, AJ
Smiles from Sunday;
Thursday, September 29, 2005
Janna escaped some pain yesterday! Dr. Tayloe decided against putting her through urine drawing (by catheter). She was happy. The lab sensitivity studies show that the type infection she has responds well to most antibiotics so he feels that the Keflex/Duricef should be knocking it out. He also prescribed Septra and wants her to take it for a month following this round of antibiotics. We are praying for NO MORE UTIs! Janna is feeling better and is having a much better week at daycare. The doctor also gave her some Clarinex Syrup to help with allergies - she can't really take many allergy meds as they would increase her heart rate. She's still having some trouble at night, waking stuffy and not breathing well. We're using saline drops and suctioning and she gets right back to sleep. We’re headed back to the cardiologist tomorrow (Friday). Please pray that Janna’s mitral valve leak is much better. Thanks and God bless each of you, AJ
Here are a few pictures of Janna's friend that lives near Aunt Elizabeth in Colorado. Jaemen has got some COOL sunglasses too!
Cool Jaemen
Sweet smile……
Precious Baby
Sporting Overalls
Recent smiles from Baby Girl………
This is over the weekend while fighting UTI – you’d never know at times, that she’s sick!
I’ll close with a sweet one – sleeping with daddy in the sun on one of those 90 degree days.
Friday, September 23, 2005
HAPPY BIRTHDAY AUNT LIZ!!! I can't wait 'til you can hold and squeeze me and see me in person at Christmas this year. I love you, Janna
Back again - Janna has another UTI (kidney infection). She is handling it well though. Dr. is trying a different antibiotic this time. Please pray that this is knocked out completely this time and doesn't return. She had been very fussy at daycare this week and some at home, not drinking her milk very well, etc. Got her an appt. for Thursday pm but daddy had to pick her up early from day care as she was so fussy and wouldn't drink/eat anything. We got an earlier appt. and Dr. Tayloe pulled urine just to make sure. It did show quite a few WBCells but he didn't think it would be too serious. He did give us sample antibiotics to start her on last night, just in case. We are thankful he did. The culture showed full blown UTI again. We pray she can soon get over this stuff and feel much better soon, although she didn't act too sick, except for a couple times today. We are thankful this was caught early this time - she has not had any temperature spikes - only a very low-grade fever a couple of times. She also had her blood drawn today to check her thyroid levels - we should know something on that soon. It was the smoothest stick ever. I told Dr. Tayloe (who is very good at this) where she's easiest to stick and he only had to dig around with the needle for a few seconds and then it was there. Janna took it all well. She cried for just a bit and got over it quickly - the worst part was having to wake her up for it. OH, and guess what!? She weighed 13lb. 10oz. yesterday - I'm almost positive they read the manual scale wrong last Friday. No way she gained 9oz. since then while not eating/drinking good. I'm sure she was 13.10 last week and has just maintained - will be glad to get to Raleigh/Duke Cardiologist next Friday for a digital scale reading. Thanks again for you prayers for this precious and tough little angel - we are so glad God chose us to send her to. She's such a blessing. In His Love, AJ
Friday, September 16, 2005 7:10 PM CDT
Sorry it’s been so long………..Janna is doing really well! We received her physical therapy re-check evaluation from August 16th in the mail. In gross motor skills Janna was functioning at the 5.5 – 7 month level. In fine motor skills she was functioning at the 4 – 5.5 month level, mainly due to her thumbs being so short. Some mild delays were noted in relationship to inanimate objects and language/communication. We received some exercise sheets to help with strengthening her trunk and back muscles. These will help with sitting, among other things. Janna had quit razzing/blowing bubbles, trying to stand in your lap, pulling up strong when holding your hands, wasn’t drinking as much milk, etc. Well, we think we know why. She was getting that Urinary Tract Infection and didn’t feel like doing these things. She wouldn’t even try to bare weight on her legs at the PT Evaluation. Since her stay at Wake Med, taking the antibiotic, and getting well, she has spunked up again! She is bearing weight on her legs for several seconds in your lap again, she’s pulling and trying to go somewhere all the time. She can sit in your lap unassisted for several seconds and is getting pretty good at it on solid surfaces too. She even moved ‘forward’ once on all fours for grandma Best last Saturday, on her new play mat that grandma got her. Janna was talking loud about it though – grandma worked her hard for the toy she was trying to reach - it was worth it when she got there. I found out that I crawled before I sat, but we all know that we are all different. We are thankful that Janna is doing as well as she is with all that she’s had going on. MeMa and PaPa Sutton worked with Janna on holding things in both hands at the same time this past Monday when they kept her. She’s always a good girl for them and they all have the best time together. Spoiled? Naah – she’s just loved a lot. She's gonna miss them the next few weeks - they've gone to Colorado to visit Janna's Aunt Liz.
We think Janna experienced her first ‘separation anxiety’ this past week, or something or other. Daddy dropped her off at Mrs. Susan’s (daycare) and Janna’s bottom lip poked out. She cried a lot that day. But she was fine the rest of the week. I know she enjoys going there to see Mrs. Susan, the other kids, and animals, but I guess she just had a bad day. I was so proud to learn that baby girl started swinging outside last week at daycare. They put her in a baby swing (with some cushioning around her little self) and she just grabs the ropes and holds on. She doesn’t like to swing every day, they said, but to picture it in my mind when I was told what she did made my day. We've got to get her an outside swing for home now.
Well, we were a little disappointed about Janna's pediatrician appointment today. Don't get me wrong, she's doing fine - her hemoglobin was up to 11.5 - NO LONGER ANEMIC! Hooray! It's her weight that discouraged us. I just knew she was 14 lbs. She weighed only 13.1 lbs. : ( But Doctor Tayloe was pleased with the way she looked/acted/sounded, etc. She's gained about a pound per month the last couple. She needs to be gaining about 2 lbs. per month though. So, here we go again. I've got a call into the Nutritionist and we are going to start adding less water to mix her formula to increase her calorie intake and whatever else the Nutritionist may suggest. She got a little behind while she was sick I guess - she wasn't drinking her milk very well for a couple weeks but has definitely picked back up. Here's a few pictures of her HELPING with supper recently.
We head back to the cardiologist September 30th.
Thanks to all those who have prayed and still pray for Janna. The Lord has truly blessed her, and us! It's hard not to see a miracle every time we look at her. She looks so healthy and is so full of life and smiles. What a blessing she is to everyone.
In His Love, AJ
Wanted to share a picture of TJ - little fellow we've been praying for (Janna's PICU roommate from Duke). This is a older one and he is home now doing much better as I posted recently. But please continue to lift him and his family in prayer. He's got a couple more heart surgeries down the road. 
Wednesday, August 31, 2005
Janna visited her cardiologist last Friday (8/26). We are going to try and come off of her diuretics again soon. Her Mitral Valve is leaking even more, but Dr. Milazzo is still not too concerned because she is doing so well. As she grows, (she is THIRTEEN lbs. now - well 13.0 at Peds/12.11 on Card. scale), he will be able to increase her Enalipril (blood pressure med) to help with the valve. Once again she did really well during her echocardiogram, although she likes to eat the gel they use to move the cameras around on her chest with – YUK! They had a Baby Einstein Video going on an overhead TV this time – so that really helped her to be still. Overall she got a good report and we go again in a month, September 30th.
Here are some pictures of her recent Wake Med visit – she really only looked/acted sick the first evening there – the rest of the time she was ALL smiles……………
Once again, I need to tell you about a little fellow that didn’t make it. Little Reese is another dear angel that is very precious to his family. Please be in prayer for them. We can never understand it all while here, but one day we will be like HIM and then we’ll know. May God bless and comfort Reese’s family.
Thursday, August 25, 2005
We've been at Wake Med for a few days - all is well now though.
I wasn't dealing too well with the news of Kylee Rose, but going on with life, although I felt that I shouldn't. You know that feeling when things like that happen - the whole world should stop and feel it with that family/you but it doesn't. Being as I was, I didn't pay enough attention to the little signs of my angel. I finally took her temp Sat. am and begin the cool compresses and Tylenol - it was nearly 103. Her head had been hot the day before but not her limbs - she's hot-natured and so I passed it off - she wasn't really that fussy. She was still smiling and playing, etc. I feel so horrible now! Poor thing - it wouldn't stay down, she was also breathing fast and with her just having heart surgery 2 months ago, we headed to the Pediatrician. I put her in a cool shower and we got the temp down some - at Peds it was 100.7. We gave her more Tylenol @ 5pm at Peds while they drew blood and urine for cultures and paged her Cardiologist. They stuck and stuck and stuck the poor child - she's so hard to stick, especially when a little dehydrated (she had not been drinking well for @ a week although she would eat formula-mixed cereal - I still feel so bad I didn't realize she was getting sick). They gave her an antibiotic injection and sent us to Wake Med in Raleigh - we could've gone back to Duke but it is 30 miles further than Wake. They told us not to stop anywhere, not go by home, etc. - just get her there as safely and as quickly as possible - so I'm thinking the worse, although Dr. Ziemer was already guessing it was a UTI because of numerous WBC in her urine. We arrive at Wake Med a little before 7pm (2 hrs. since Tylenol) and her temp is 106! It scared us. But all is well now - she did have a UTI - they did an ultrasound and VSUG (put dye up to see tract/bladder/kidneys) - her urine was not refluxing back into kidneys so that is a blessing - just had this infection and we have about 10 more days on the antibiotic. The blood work also showed that she was very anemic - is suppose to have that re-checked again at Peds in a couple weeks. Me Ma and PA PA Sutton took her to Peds yesterday for a follow-up appointment from being in the hospital - she was a good girl and gave lots of smiles. She has a cardiology appointment tomorrow. She really enjoyed her stay in the hospital much better than in June, except that they had to put an IV in her scalp - couldn't get a stick any where else. She tossed and rolled so much it came out Monday am. and she got her first hair cut (g-pa, the Barber, didn't get to do it :( (but it wasn't a real hair cut). There was so much tape on her head it wasn't worth torturing her, so we said just cut it out! Janna was so pleasant in the hospital, talking and smiling at all the doctors and nurses - she was a great patient. We were discharged Tuesday afternoon and Janna was so glad to get home! Her schedule didn't get too messed up. She pulled almost 12 hours the last 2 nights at home and is still waking up smiling......we thank God for seeing her through and give Him all the glory.
Please remember Kylee's family, during this time and another baby that was at Duke when Janna had her surgery - Savannah. Savannah received her angel wings last week also. She was born with T21 and needed a liver transplant but never got it. And we have good news for TJ!!!(Janna's PICU roommate from Duke). He recently got to go home for a few days and went back to the hospital in Asheville and then back to Duke. Monday at Duke they did a heart cath to open up/widen some arteries to prepare him for upcoming surgeries but they didn't need it! While they were in there, they noticed his aorta was narrowed and so they did a balloon to widen it and his oxygen levels improved! They are looking at his next surgery (#2) (I think he will need a total of 3 to correct his heart) to be around 5-6 months down the road and, Lord willing, he's going home in the morning - for more than just a few days!!! Hoorray for TJ - he's worked so hard and so have mommy, daddy, and Big sister, McKenzie. We miss you TJ and are praying for you. Love and prayers, Janna and family
Friday, August 19, 2005
This entry is dedicated to a beautiful angel, Kylee Rose.
Please, please give your kids EXTRA hugs and kisses today! Few know what it's like for them to be here one day and gone the next. Only the Lord can provide strength for those who've been there. Love and prayers to the Smith family...........
I'm sad to say that little Kylee Rose
out in CA (asked you for prayer at church and on here recently) received her angel wings yesterday.
Beautiful Kylee smiling. 
Please be in much prayer for her mommy and daddy and family. Since her heart surgery, August 3rd, she had been having some complications with breathing. Here's something her mom wrote;
Kylee Rose was born with a congential defect. She has Trachea Stenosis. They wondered if we ever noticed her having trouble breathing before all this. I never did! She was always healthy and never acted at all like she was having a hard time breathing. A simple cold could of killed her before this surgery. Since she had major surgery this worsened her trachea. They got the swelling to go down, but found that in our terms, not doctors words, your trachea is normally like a horse shoe of cartlage. Kylee's was all the way around and would never grow with her body. Since the surgery and having the tube down her throat that caused the swelling and after it went down, there was scarring. They could not even force a tube down to ventilate Kylee. The bypass machine was breathing for her. The surgeon offered my husband and I a VERY risky surgery. He said there was a 20 - 25hance of making it out of surgery. IF she made it out of surgery they would still not be able to ventilate her and she would have to be on the bypass machine. You can not stay on the bypass machine long because it can cause infection. She had already been on the bypass machine 5 days and normally they try to get you off it 5 to 7 days. The doctors and nurses, there is a BIG team of them and they are the BEST on the West Coast, explained to my husband and I that if Kylee made it through this the odds were against her. She would definitely be in the hospital for a good year and have to have repeated surgeries to open her airway because of scarring and probably breathe through a tube for the rest of her life. I can not stand to think of putting my little tiny Angel through all of this. My husband and I elected to not go through with the surgery. It is NOT FAIR TO HER!!! I feel so bad. Like I made her the way she is. Kylee Rose entered in to rest at around 10:25 a.m. this morning. August 18, 2005. She went so peacefully in mommys arms. I don't think my husband and I have ever had to make such a decision as the one we made today. I asked the Lord for strength and guidence. You are all so lucky you have your Angels at least you get to hold yours. Give them kisses for me and Kylee and know that she is not far behind watching over everyone. She is so beautiful! You are all like my family and biggest support group. I love you all. I hope me posting this does not scare all of you awaiting surgery. We were one in a million to have this heart defect and trachea stenosis. I know its hard not to be scared to death. Trust in the Lord and he will give you strength to get through. God Bless you all!
Wednesday, August 17, 2005
Janna had her 6 month EI (Early Intervention) evaluation by the PT (Physical Therapist) yesterday in Goldsboro. Mrs. Lisa (PT) was pleased with her physical activity. We will be receiving a copy of the evaluation by mail and I will post again at that time concerning her functioning levels for developmental skills. Lots of tummy time has helped Janna with her development and daddy really likes working with her on her crawling skills at night – she is coming along great. Needs to work on strengthening her back muscles which we will start doing.
Daddy (Joseph) had 2 cardiac appointments lately. A follow-up echo at Duke showed that his heart has gone down in size and is working great since the valve replacement last December. His cardiologist told him to do whatever he wanted – work in the heat, mow grass, surf, play tennis or whatever. His blood pressure is great. Today he had an appointment with his electrophysiologist at Wake Med. Again he got a good report – from his defibrillator, they print off every heartbeat since the last visit and it showed no episodes. Dr. Campbell told him that had they NOT got things straightened out (valve replacement, etc.) that he would have been a good candidate for a heart transplant. We are thankful the Lord worked things out as He did. Joe is getting along really well. Today his heart rate was 59 and blood pressure was great again. They also reprogrammed the ‘faulty’ defibrillator (yes, he’s got one of those you’ve heard about in the news). They will not need to go back into his chest to replace it – a final reprogramming will be done in December once the FDA has approved the companys’ actions on these faulty devices. Good news!
We head back to the cardiologist with Janna next Friday – the 26th. She is getting along much better with her breathing/fluid since she started back on the diuretics at half doses.
Please continue to remember TJ and also another little angel, Kylee Rose that had her heart surgery on August 3rd. She is having some complications and needs your prayers. She has been in ICU for nearly 2 weeks now out in CA. We know God is able and we ask for these little ones, believing. He can! God bless you all, AJ
Sunday, August 7, 2005
Sunday, August 7, 2005
Janna weighed a little over 12 pounds last week. She had an appointment at Duke Thursday and Goldsboro Pediatrics Friday. All went well. Everyone is pleased with her growth. She did run a little fever and was fussy Saturday from her 6 month vaccinations.
Also, after last weekend, we had to start Janna back on her diuretics as she was not breathing well and got a bit clammy while eating. So, after giving her a dose of Lasix Monday morning, I called her cardiologist. He put her back on the diuretics at half the doses she was getting. He feels that she just came off a little too soon.
Janna's still keeping busy - she went to her friend Justin's first birthday party last Saturday (mommy got a few pictures but doesn't have them ready to post yet). Janna really liked looking at Justin's balloons. Here's the picture of Uncle Curtis trying to give Janna watermelon at his birthday party earlier in July. Grandma is holding her. 
Janna is becoming quite acrobatic. Here's few pictures of our future gymist.
We attended a family reunion near Greensboro today. Everyone was so glad to meet Janna for the first time. These were Grandma Best' family that have been praying for Janna. They were so happy to see the sweet angel. Mommy's camera battery died after the first 2 pictures so........she doesn't have those 2 ready to post either. But here's a cute one of late - the good girl giving mommy a big smile.
We have another family reunion next Sunday in Rocky Mount. This will be Grandma Sutton's family. Mommy will try not to bring a dead camera.
Janna's 6 month evaluation with the Physical Therapist has been scheduled for Tuesday, August 16th in Goldsboro - this will be a travel clinic from Greenville. Keep checking for updates - mommy gets to them when she can.
As soon as I find out about TJ I will update again - please pray that he is doing well and gets to go home soon - if he's not already done so.
Thanks again to everyone praying - we truly appreciate all the thoughts and prayers for our little angel - she is doing great! God bless you all, AJ
Sunday, August 7, 2005
Sunday, August 7, 2005
Janna weighed a little over 12 pounds last week. She had an appointment at Duke Thursday and Goldsboro Pediatrics Friday. All went well. Everyone is pleased with her growth. She did run a little fever and was fussy Saturday from her 6 month vaccinations.
Also, after last weekend, we had to start Janna back on her diuretics as she was not breathing well and got a bit clammy while eating. So, after giving her a dose of Lasix Monday morning, I called her cardiologist. He put her back on the diuretics at half the doses she was getting. He feels that she just came off a little too soon.
Janna's still keeping busy - she went to her friend Justin's first birthday party last Saturday (mommy got a few pictures but doesn't have them ready to post yet). Janna really liked looking at Justin's balloons. Here's the picture of Uncle Curtis trying to give Janna watermelon at his birthday party earlier in July. Grandma is holding her.
Janna is becoming quite acrobatic. Here's few pictures of our future gymist.
We attended a family reunion near Greensboro today. Everyone was so glad to meet Janna for the first time. These were Grandma Best' family that have been praying for Janna. They were so happy to see the sweet angel. Mommy's camera battery died after the first 2 pictures so........she doesn't have those 2 ready to post either. But here's a cute one of late - the good girl giving mommy a big smile.
We have another family reunion next Sunday in Rocky Mount. This will be Grandma Sutton's family. Mommy will try not to bring a dead camera.
Janna's 6 month evaluation with the Physical Therapist has been scheduled for Tuesday, August 16th in Goldsboro - this will be a travel clinic from Greenville. Keep checking for updates - mommy gets to them when she can.
As soon as I find out about TJ I will update again - please pray that he is doing well and gets to go home soon - if he's not already done so.
Thanks again to everyone praying - we truly appreciate all the thoughts and prayers for our little angel - she is doing great! God bless you all, AJ
Saturday, July 30, 2005
We've almost gotta 12 pounder! Janna weighed 11 lb. 14 oz. and was 23.5 inches long yesterday at her cardiologist visit. Dr. Milazzo was very pleased with her weight as well and how she looked/acted. She gave him a BIG smile too. She was between the 25th and 50th percentile on weight, a little under the 25th percentile on height, and a little under the 5th percentile on head circumferance - but hey, we don't want her to ever be big-headed, LOL. She gained almost 2 pounds in a month!
Once again, she was very good for the echocardiogram. All looked well, except that her mitral valve is leaking more than it was before. But Dr. Milazzo says he's going to treat the patient, not the echo - she shows no signs of a leaky valve so he's not too uptight about it. He increased her Enalapril (blood pressure med) and took her off all diuretics - YIPPEE! We're down to 3 medicines 2 times a day each - still on reflux meds. He is pretty sure he can treat this valve regurgitation with medicine.
After her appointment, Janna got to meet some of mommy's past co-workers in Garner. This was her first outing in a restuarant - she was amazed at all there was to look at. And she let everyone hold her with no fuss. I think she loved the attention.
We give God all the glory for Janna's recovery and health!
Please continue to remember TJ as he is fighting. May God bless him and his family. May they all be home soon.
Wednesday, July 27, 2005
PLEASE PRAY FOR TJ (Janna’s PICU roommate at Duke) – see last paragraph!
Janna is having a busy month! She’s already been to 3 birthday parties and we have one more this Saturday. Her friend, Justin from church will be turing 1. He really likes Janna – he just laughed and laughed at her Sunday at church and wanted to get hold of her.
Her 1st birthday party ever was Uncle Curtis’ birthday July 4th weekend at g-ma and g-pa Best’ house. We had a nice cookout and lots of fun, although Janna slept a lot in her swing. Mommy has a picture of Uncle Curtis trying to let Janna taste watermelon – will post soon in ‘view photos’ section.
Then this past weekend we had 2 more birthday parties…. another cookout at the Best Residence for Mr. Gardner – aka, ‘Haywood G.’ Haywood G. is an older man who lives in Mt. Olive that my parents kinda took under their wings several years ago. He doesn’t have any family around plus he can’t read. He helps daddy cut grass some and momma always helps him with stuff at the Post Office. He was so happy to have a birthday party and was thrilled when he received a picture of Janna in a birthday card.
We left this party and headed to the community swimming pool for cousin Hunter’s 11th birthday party. He had a really COOL electric guitar cake that his mommy made. Janna had her first experience with a pool. We held her so her feet could dangle in the water at the kiddie section steps. She was very curious of the black painted lines on the 2 steps and the water rippling above them. We eased her on in up to her chest and she patted the water some with her hands. Aunt Chanda took her in the water and she did fine although she seemed a little unsure about it all. She was very tired by this time of day though. She slept so good that night that she scared daddy the next morning when she wasn’t up bright and early.
Janna is eating well – she takes pears, peaches, squash, sweet potatoes mixed in with her oatmeal cereal. She really loves sweet potatoes! Still won’t take carrots though. Some days she drinks her milk well, others she just doesn’t want as much. She’s definitely filling out as you can see in the big picture above. We go to the cardiologist this Friday and will get a true weight. We are expecting between 11/12 pounds.
I’ll update this page soon after her appointment.
Lots of prayers needed for TJ – remember, Janna’s PICU roommate at Duke. I heard from his parents and little TJ is still at Duke. He’s been there so long. He got a urinary infection that went into his bloodstream and that’s made his stay longer. The infection has been very resistant so they are doing 6 weeks of antibiotics. Here’s what his mommy wrote on July 20th – “They have also decided to do a stomach wrap and a feeding button for his throwing up. They took him off the vent the day before yesterday I think but he is doing very well. They put the C-PAP (definition below) on and are trying to wing him off of that by tommorrow. They have to go in some time and put in a line in the big vessel in his liver and take the one out of his chest because it's leaking and swelling. He is almost up to 7 lbs in weight, and is still gaining but slowly. But other than that he seems to be doing fairly well. Hopefully we can bring him home soon. Please keep everyone praying for him and his little setbacks.”
Love in Christ, AJ
(CPAP) What Is Continuous Positive Airway Pressure?
Nasal CPAP delivers air into your airway through a specially designed nasal mask or pillows. The mask does not breathe for you; the flow of air creates enough pressure when you inhale to keep your airway open. CPAP is considered the most effective nonsurgical treatment for the alleviation of snoring and obstructive sleep apnea.
Tuesday, July 12, 2005
Janna spent her first weekend out of town. She stayed in Fayetteville with her Sutton grandparents this weekend and was a good girl! She went to church with them and got to see all the people there that have been praying for her. She also gave these new people BIG smiles. She slept well too. Mommy and daddy sure did miss her but we needed some down time - it was good to get away and relax.
Haven't been to the doctor in awhile (thankfully), but by the home scales, Janna appears to weigh 11 pounds. Will know her true weight on the 29th - cardiology appointment, and maybe we can stop some of the meds! She is eating cereal with a little fruit really well. She really does NOT like carrots so far though.
She will be having another EI evaluation by the PT out of Greenville coming up soon for the 6 month mark.
Janna is doing really well - she's strong and has recuperated wonderfully from heart surgery. She is still bothered some with reflux - coming back up into her throat, but not spitting up. Please help us pray about this as it can cause a lot of damage to the esophagus if it continues. She's still on Prilosec and Reglan for this.
We praise God for our angel baby everyday. He has truly blessed her and us all. Thanks for checking her page - pleases sign the guest book - we'd love to know you were here.
Love In Christ, AJ
Thursday, June 30, 2005
Janna got an excellent report today at the eye doctor. She told us to come back in one year. She used all kinds of colorful gadgets to test her eye movement, etc. She was really good with Janna and baby girl even gave her a smile. They also dilated her eyes and the optic nerves/retinas both looked great to the doctor. We are so blessed - so many have prayed for this little angel, even before she got here, and we know that God hears and He has truly blessed.
Another praise - Janna seems to be back to routine. She has slept 8/9 hours at night for several in a row now. Mommy and daddy are so pleased, and rested.
And Janna made it to church for the first time this past Sunday - she did really good! Daddy was nervous that she would 'cut a shine', but not our angel - ha! We are feeling a little better about getting her out in public but she has really only been to doctor's appointments and now to church.
And she settled right back in at Mrs. Susan's (day care) this week and was very good - still eating like a champ. She always eats lots of rice cereal by spoon for Mrs. Susan. We can't wait to see the scales later this month.
Her incision is still healing and looking well. She's still wiggling all over and trying so hard to sit on her own while in your lap. Check back soon for another update.
God bless, AJ
Friday, June 24, 2005
We've gotta 10 pounder! Janna has gained 6 ounces since last Friday - yippeee! Dr. Milazzo (card.) thought she looked really good and was amazed at how well her incision has healed. She still has some mild and mild/moderate leakage in a couple valves (Echo showed) but he expects these leaks to improve with time and growth. There is also a tiny, tiny leak in her gortex patch but cells will soon grow over the patch and that will not leak anymore, and if it did, he said it would not be a problem. We go back in 1 month and then maybe we can get off of some of the meds - still 5 a day for now at various times - fun, fun! Janna is too smart now - she tries really hard NOT to take her medicines. The ENT appointment was a bit useless as she is having no ear/nose/throat problems and also she has passed 2 prior hearing tests so they saw no need in doing another one. We did get to buy another parking ticket for the visit - LOL. The doctor explained in detail some of the things that could happen health-wise in these areas (i.e., tubes in ears) but we're praying for health, health, health and her ears have always been clear. This appointment was scheduled by the Ds Clinic when we went there in May - heading to the eye doctor next week. They're still keeping our angel busy. She's actually slept better the last couple of nights - we quit giving her Reglan at night - doctor told us how to dose it today so that maybe it wouldn't make her restless at night. She's still having some reflux symptoms (not spitting up though) when she eats but it's not too bad. She's been enjoying rice cereal again by spoon - that will help her weight catch up. Oh, I forgot to mention last week that the Pediatrician said she was on target with length and almost with head size - only has to catch up with her weight - which she's headed in the right direction on that now. Thanks to you all for remembering her in prayer. God brought her here and He's really brought her through something of late - we know He will continue to bless and heal and strengthen her for the work He has in store for her. Another thing - she's really been smiling a lot more lately - she knows she's at home! Love in Christ, AJ
Thursday, June 23, 2005
Janna is doing well - still having a hard time settling down at times. But I found out that the #1 side effect of Reglan is restlessness, jitters, etc. She gets this every 6 hours around the clock. We didn't give it to her last night and she only woke up once for a diaper change - didn't even want to eat and went right back to bed. We've had some rough nights lately. Will have to ask doctor about this med. She has an ENT appointment at Duke in the am at 9:15 and sees her cardiologist in Raleigh at 1pm. I will post an update concerning these appointments. We are expecting her to be over 10 pounds by now. She's eating well but having some signs of reflux again but has only spit-up once in the last 3 weeks. Check out her new pictures - sorry it's taken me so long to add updated ones. She was so pitiful in the first hospital picture in the PHOTO section below. She's so glad to be home and so are mommy and daddy. Maybe we'll all be getting some good sleep again soon. Thanks for checking her page and for the many prayers for this little angel. God bless, AJ
Saturday, June 18, 2005
........and is this corner, weighing in at NINE POUNDS and TEN OUNCES, feather-weight fighter, Jannaaaaaa Sutton! Yes, we surpassed 9 lbs! Janna has gained nearly a pound since we left for Duke 17 days ago. She got her stitch out of stomach (from surgery drain tube) yesterday at the Peds, and one more vaccination that they missed at Duke. And she slept 5 hours for the first stretch last night and then another 3 - she's getting back to her old self, slowly but surely. She's still having some trouble sleeping during the day (unless you hold her), but she's been through a lot lately and deserves some extra holding. She's still eating well, but quite often - maybe her little tummy will soon be able to hold more at the time.
Thanks to all who prayed for Joe - he recieved his certificate in the mail today - He PASSED his test for work, only by the grace of God! He had no idea he would pass it with all we had going on and very little time to study. God is good, ALL the time!
Spoke with TJ's momma this am (Janna's ICU roommate). He is doing better and now has his ventilator tube out. His right side vocal chords are paralyzed which is a positive thing for breathing but could cause problems with eating later. I don't know all the details on this but God does. Please keep lifting this little fellow up in prayer. They were told they may get to go home this coming Monday. Keep fighting TJ!!!
In His name, AJ
Thursday, June 16, 2005
whew... Janna has been having a hard time adjusting - she's glad to be home but it's been 'day time' for her for 2 weeks - lots of lights and noise in ICU. she still knows when it's night, but she is having a hard time sleeping any time. she jumps in her sleep and wakes up and wakes up crying (she hasn't done that since she was first born). plus she got 3 vaccinations the minute before we left the hospital - she's been sore and fussy and starving - can't fill her up and don't want to give her too much and hurt her tummy. she ate a 6 oz. bottle yesterday afternoon and 5 more within a 4 hour span. we cannot believe the difference in her eating! we know it's just gonna take some time and we are praying she is back to her old self (and schedule) real soon. we are taking turns sleeping and getting a taste of having a true newborn again. we hope she will be off of some of her meds soon - visit pediatrician (he can take stitch out from where she had stomach drainage tube) this Friday and cardiologist next Friday. i'll keep updating this page and again we thank you all for praying - it really brought us through. we are so glad to be home. Be God's, aj
Tuesday, June 14, 2005
CAN YOU BELIEVE WE ARE HOME!!?? - all praises to God for a big turn around in such a short time. we were being told about possible tests and sugeries one day and 2 days later we're HOME! Thanks so much for praying - we know God is in control at ALL times, it's just been hard doing some waiting, but baby girl is now doing some of the best sleeping we've ever seen her do, except while sedated of course - but this is real sleep, peaceful sleep - a sleep that is sure to bring momma and daddy into view when I awake kinda sleep. Janna is in her swing and she gets some good naps there - she's been missing her swing for the last 2 weeks. It was a sleepless night for me on 5300 but I never knew I'd have energy for this day until the cardiologist came by this am and said, "How'd you like to go home?" I'll have to write more later, for now I'm gonna watch my angel sleep and stretch while the washer churns and the grass grows. I cannot believe the corn got head high while I was in Durham. truly said, 'there's no place like home!' i'll be back here soon with updates. thanks again for all the many prayers for Janna - she's been a real trooper! In Christ name, aj
Monday, June 13, 2005
we had an exciting day! Janna got to move to a step-down room (5326) and she was stoked - got to roll down halls and see new things. she likes her new room, especially since mommy and daddy can be with her all the time now. God has truly blessed us this day! the docs are leaning more toward the reason behind the heart rate thing as it just being Janna. her dips last night and today were into the 80s and a few 70s, but she came right bk. up on her own w/o any intervention. these all ocurr while she is sleeping and so they do not think it's from reflux although they still may do the pH test tomorrow. since we told them about daddys low heart rate when he sleeps they are thinking this could be just how she is and also could be from edema and trauma from major surgery. since it's improving and she's bouncing bk. so quickly on her own now, i think they may just watch her a few more days before turning to the pacemaker idea. it seems to get better every day and we are praying for no more surgeries. we are all very happy to be in a room instead of ICU. today has brought on a big change and lots of smiles - by the way, the also removed the feeding tube as baby girl is ready to eat every 2-3 hours, sucking down 3 oz. bottles in less than 15 minutes and wanting more - we have to start slow so we don't overload her and it's a joy to feed her now! the Reglan has been wonderful helping w/ reflux and stools - she's still needing a little help w/ stools but overall is doing well with feeding and stooling. oh, and she takes her medicine like a champ anymore, by mouth - guess it's 'cause she's so hungry or maybe she's just got used to it like she did the feeding tube. she's been the perfect patient today and we are glad to be a step closer to going home. thanks for all your prayers, for remembering baby girl and passing along the info. we truly appreciate everything. praises to God for positive information today and for gettng Janna to a room. will keep you posted. God bless, AJ
Sunday, June 12, 2005
sorry guys - that i have not updated here for awhile - just didn't want to upset anyone w/ upcoming surgery.Janna is doing well - she is sooooo ready to get home and it's just been frustrating. many of you know there has been an issue w/ her heart rate dropping low - this seems to possibly be from the trauma of surgery. her surgery went really well - good repair etc. hole was size of 50 cent piece. she looks great and everyone loves her here - she is so energetic and it surprises her nurses - they have a time containing her to a bed - we get her out as much as possible during the day - as hard as that is w/ tubes and wires everywhere to be careful with. we've been going to a step-down room for many days now and it's never happened. we thought we'd leave ICU today but her rate dropped again in the night while sleeping and dr. Jaggers wants to do a little more - she's wearing another heart/halter monitor again for 24 hrs. and Tues. am @ 9am will be 48 hrs. off of Prilosec and they are going to do a pH test w/in her esophagus (or however you spell it) to see if maybe reflux could be the cause of her heart rate dropping. if it is, they will want to tighten her nisson (take some stomach lining and place it around esophagus to strengthen that muscle so the flap there will not allow acid to come bk. up. if that is not the case, they may have to implant a pacemaker - they are really trying to avoid that. we also discussed w/ them today that daddy's heart rate does the same - drops really low while asleep and he has a defibrillator so the dr. thinks it could possibly be just how she is. all her incidents w/ low rate have been while sleeping (when she gets a chance for that - it's really loud in ICU and she is used to a quite house, especially at night) we are really praying that she doesn't have to have either surgery. only the Lord can help them find out exactly why the low heart rate deal is ocurring. please help us pray about this. Janna is doing really well other than trying to figure out why in the world mommy and daddy won't take her home. she is so tired of being hooked up to so many wires/tubes. still has feeding tube but is eating well w/ bottle - they just won't let us over do it - only can give her 1.5oz. every 3 hours - just enough to make her mad - she is hungry and her heart is really strong now and she wants to eat! of course she's getting feeds around the clock with the tube, but she wants to do it herself. she is being such a trooper putting up with it all. we've been blessed with wonderful nurses and it's amazing watching her with them - she can sense how they are and we know the ones she is more comfortable with. it's hard to leave her at night especially now that she is not sedated and sees what's going on. if we could only get to a room where one of us could stay with her around the clock.... the Reglan has been great - it's the best reflux med for her thus far - she is having no trouble with gagging/spitting up etc now. well, mama's got to get some sleep, daddy talked her into coming bk. to RMcDonald house to rest tonight while her sits w/ baby girl until she gets off to sleep good for the night. the only times we CANNOT be in ICU (as long as we stay awake) are 7-9:30am and 7-8pm. Thanks again to you all for praying for little Janna. She is doing great other than the heart rate drop thing - please pray that they soon figure out exactly what is causing this. In His love, aj
those of you w/ upcoming suregeries, please know that this is an unusual thing - most kids are home way before now and get along great - it's amazing to see how much stronger Janna alreay is and that she's so eager to eat and eat a lot! we will be praying for you and your angel babies - God is going to see them all thru - Mia did well with her surgery and is home doing great. little Madison and Kylee are both going to be fine too. Keep the faith, aj
Sunday, June 5, 2005 7:45pm
Hello everyone,
Janna has had a pretty good day. They took the breathing tube out ~ 1pm and she slowly woke up through the day from the sedation. They removed the feeding tube as well ~ 4pm and daddy fed her - she ate 2.5 oz and did well. We both got to hold her and she snoozed a long time on our shoulders and you know we enjoyed that. Her heart rate kept dropping low this afternoon as she slept, but they think it's due to reflux? They did an EKG and it looked good so they are just going to keep a close eye on her heart rate. She sure was glad to get the tubes out - now only oxygen to deal with - she's doing pretty good with it but still wants to pull it out occasionally. Maybe a regular room tomorrow. Please pray for TJ(Timothy Joseph), Janna's roommate, he's having a hard go - sweet little fellow from the NC mountain area. He was born with only half of his heart functioning. Dr. Jaggers also operated on him and now he has about 3/4 of his heart working. He got his breathing tube out today also but he's had a few set-backs and is weak. He's only about 2 weeks old. Remember him and his family as well. Well, momma and daddy are ready to head back over to see baby girl - can go back in after 8pm. Thanks again to everyone for the continued thoughts and prayers. Be God's, AJ
If you missed an entry from yesterday, just click on journal history to catch up. Thanks!
Sunday, June 5, 2005
now that i've had a little sleep, let me type some things i forgot to mention in last nights entry. the repair to Janna's heart went well - the hole was the size of a 50 cent piece. her mitral valve is still leaking but not too bad - she may be on meds for this and possibly another surgery down the road. since the choking spell (they said it was like an upper airway obstruction but nothing was in there/but maybe her tongue slipped bk.), they've performed 2 echos - both showing a strong heart muscle and no problems. they started Lasix again last night to help with her kidneys and that is going well. also they are starting her on Reglan this am to help with the reflux problem and hopefully that will help too with her getting choked from reflux/flem. the sedation has been ceased and she is slowly coming alive - not too wild yet, but they better come on and get the breathing/feeding tubes out before she does it for them. we are ready for her to be awake again and able to eat/move/look around etc. not sure about a regular room yet, but we don't want her out of ICU too soon - want to make sure the choking stuff is gone. well, gotta run to see baby girl. thanks be to God for a wonderful repair, for looking out for her (the choking spell happened at shift change - lots of doctors outside her door at the time, etc.). Also they said she was their star for the 24 hr. prior to choking and were even wondering why she was still there and not in a regular room yet (there were none available - God knew that). She may get to one today I suppose - we'll see. Thanks for all the many prayers. Our angel is truly a blessing from above and we are so thankful for her and proud of her. Can't wait until you all can see her and be around her some. In Christ name, AJ
Saturday, June 4, 2005
Many of you may know - Janna made it through her surgery well. It wound up being the second one of the day Thursday and we knew all was well by 3pm. But that evening was the worst part - she could not settle down - she was worked up from the anesthesia/pain meds and could never settle down - we saw her get 3 hits of morphine in less than 2 hours and nothing - she could not be still - indeed it's been the worse part! She constantly wiggled and tried to pull every tube/wire in reach - they had to restrain her hands. She only slept 1.5 hours Thursday night. Being the busy little child she is, she convinced them to take away the breathing tube and various other tubes first thing Friday morning - they knew she would do it for them otherwise. She settled down and had a better day, ate well, burped well, rocked well, etc. It was so good to hold her. She still never seemed to get all her coordination back. Things were looking real well, but we got a call this morning saying that she had a choking type incident that required the breathing tube again - she has been sedated ever since because she will remove the tube if not. She also has a feeding tube. The doctors have had many tests run to try and figure out exactly what went on - nothing is showing up - a brain scan, kidney scan, all kinds of blood work, etc. All looks well. Her lungs are a little crackly but they do not think it's too bad. We told them about the choking-type spells she has at home and all agree it must have been one of those and that she wasn't able to recover from it and breathe because of weakness from surgery. She was also very pale during the episode and has required some blood. Her kidneys produced a lot of blood today but have really cleared up now - these were possibly clots from being clamped off during surgery. She is breathing over the respirator most times now and the tube could come out, but they have chosen to keep it in thru the night and let her just rest. Plans are to remove it again in the morning. Then she can start back eating again by mouth tomorrow too. Please pray that this little angel can have another good start and stay strong and not get choked/strangled any more. Not sure how clear this entry is - it's been a long few days. My brother has been busy moving and did not get a chance to update - didn't realize I could update here at the Ronald McDonald House until tonight. Will update again here soon. God bless you all, AJ
Tuesday, May 31, 2005 Check back as my brother will be updating this journal Thursday or Friday after Janna's surgery.
Hello everyone!
Janna sure seems to be filling out - looks a little more pudgy although we know she hasn't gained a whole lot, we're expecting her to be nearing 9 lbs. Thanks to you all for praying - the Lord is working. We've gotten around 15 ounces in her a few days lately but overall she doesn't take much in. Her reflux does seem to be some better - not every feeding is a fight. I'd love to take her to get weighed today but no need in exposing her to any sickness at the Doctor's office. I'm sure they'll weigh her in the morning.
We have to be at Duke at 9:30am for her pre-op work and an echocardiogram. We have reservations at the Ronald McDonald House a few blocks from Duke. We'll be staying there while Janna is in the hospital. We are praying for a short visit and a speedy recovery. Her surgery is slotted for afternoon Thursday but they are trying to move it to the first one of the day. We will not know which time she has (~6am or ~1pm) for sure until the pre-op work tomorrow. Her surgeon is James (Jim) Jaggers and we lift him up to the Lord who guides his hands and his mind. He also performed Joe's valve replacement last December.
Once again we thank you for your encouragment, your concern, acts of kindness, and especially for your prayers for our little angel. She came straight from God and we know He will be with her in these big days ahead and always, of course. God bless you all, AJ
Thursday, May 26, 2005
Well, since Janna refused the feeding tube last week, we've been offering her milk as much as possible. She's doing pretty good although it's a fight to get anything in her many times. Monday at Ped. she weighed 8lb. 8oz. and Dr. Tayloe thought she looked really good and strong. Cardiologist called and wanted us to take her in to Ped. for a weight check yesterday - daddy was home with her and so he packed her up - she had gained 2 ounces!!! She's at 8lb. 10oz. Card. also called in Digoxin which will help her heart beat stronger/more efficient up until surgery next week. We started her on it last night - another medicine! I never knew when she was born that we would fill up a medicine cabinet so soon. Hopefully after surgery she will not have to be on so many meds. We are praying that her reflux will improve also. Dr. Tayloe switched her Zantac to Prilosec Monday. Maybe this will work better for her. The reflux/heart burn is what really makes it hard for her at feeding time. She wants to eat but as soon as she's sucking, she wants the bottle right back out, as if her throat hurts. Almost immediately she wants it back in because she's hungry and so forth and so on. During all this she is arching her back and fussing - we look forward to better feeding days. Thanks to everyone praying - we know God is the reason she is gaining weight and doing as well as she is on so little milk. SEVEN more days 'til surgery. Love in Christ, AJ
Saturday, May 21, 2005
Sorry this entry is so long - it was quite an eventful day!
Janna had her toughest day yet yesterday. We headed to 8:30 appoinment with Duke Cardiologist in Raleigh expecting a quick visit and planned to cut grass the rest of the day. We finally made it home 14 hours later. Because Janna had dropped an ounce, Dr. Milazzo wanted a NG (feeding ) tube put in - he didn't have the correct size tubing (really small for her) and so he called Goldsboro Ped. but Dr. Tayloe was not working - we got connected with Dr. Griffin and met him at the hospital in Goldsboro with plans of her staying 24 hours - just to watch the tube/make sure everything was okay with it. The importance of this tube is to get her strengthened for surgery so she'll gain and be able to recuperate faster. Well, little miss Janna knew from the get-go that she wasn't interested in a feeding tube - besides, she's picked back up to ~15oz. over the last few days. It was terrible - she was so pitiful and burned so many calories while getting the tube inserted - she never got used to it but I finally got her calmed enough to nap a little on my shoulder. She was exhausted from traveling all morning and doing without a long nap. When she awoke, she got restless again and managed to pull the tube out. So, they planned to try it again, much to daddy's dismay. Daddy called cardiologist to inform him of situation - he suggested trying once more as well, but if she never calmed or continued trying to pull it out, we should not attempt it again. Daddy made a pact with the cardiologist - we will feed her every 3 hours around the clock if it doesn't work this time - no more sleeping 6-10 hours during the night. Well, I know my child, and knew she wasn't having that tube and they couldn't believe how active/smart she was about the thing. Although we didn't want to put her through it again, we gave it another shot - this time they used a reflux sleeper thing to strap her in and keep her upright. She handled it a little better as we each held a hand and sang and whistled and did tricks that never calmed her. Well, this time we got nearly 3 ounces in her and meds. They found a rocking chair and as she was crying and the last of the formula was slowly gravitating into her tummy, she began to cough/gag and nearly lost it all. Thankfully she didn't - the nurse stopped right there and I burped Janna and she fell into my chest with a pitiful tired cry. Immediately I noticed a wet tube on my arm so daddy runs for the nurse that has just stepped out - I just knew the thing had broken off in her tummy, but it was all there - she had cried so hard she worked the thing out. Needless to say Janna doesn't have a NG tube. She started eating at 4:30 this am and lost the 2 ounces I got in her. But since, she's ate really well - ate on the hour for a few and then took a good amount at 11am and has been sleeping for about 3 hours - time to get her up and keep the pact - she's already kept down 10 ounces for the day. We are praying the Lord will help her eat and gain over the next 12 days. We know He can do it. Please help us pray for Janna - we are so grateful for all that have been keeping her lifted in prayer. She'll see Dr. Tayloe Monday at 2pm - mainly for a weight check. Mama and daddy will never let them try another NG Tube - they didn't do the other kind thru stomach because this is not long-term nor does she need another surgery so close to her heart surgery. We know God will take care of her and we are actually looking forward to June 2nd so she will soon be able to eat more and grow!!! God bless you all, AJ
Thursday, May 19, 2005
Well, the strong spitting-up has returned - twice yesterday for Susan and then again this morning for daddy. He had to give Janna all her meds over again. She's still eating pretty well though. Thanks to all of you that have signed the guest book - for your encouraging words and especially for taking the time to pray for Janna. We know that she has done so well because of prayer. God really has His hand on her. Please help us pray that she will remain strong and eat well right up to her surgery - we need her as big and strong as possible for this. I will try to post some new pictures of our little angel - check photos below. Thanks for checking on Janna and for your continued prayers.
God bless you all, AJ
Thursday, May 19, 2005
Well, the strong spitting-up has returned - twice yesterday for Susan and then again this morning for daddy. He had to give Janna all her meds over again. She's still eating pretty well though. Thanks to all of you that have signed the guest book - for your encouraging words and especially for taking the time to pray for Janna. We know that she has done so well because of prayer. God really has His hand on her. Please help us pray that she will remain strong and eat well right up to her surgery - we need her as big and strong as possible for this. I will try to post some new pictures of our little angel - check photos below. Thanks for checking on Janna and for your continued prayers.
God bless you all, AJ
Thursday, May 19, 2005
Well, the strong spitting-up has returned - twice yesterday for Susan and then again this morning for daddy. He had to give Janna all her meds over again. She's still eating pretty well though. Thanks to all of you have signed the guest book - for your encouraging words and especially for taking the time to pray for Janna. We know that she has done so well because of prayer. God really has His hand on her. Please help us pray that she will remain strong and eat well right up to her surgery - we need her as big and strong as possible for this. I will try to post some new pictures of our little angel - check photos below. Thanks for checking on Janna and for your continued prayers.
God bless you all, AJ
Wednesday, May 18, 2005
Janna has been doing well the past few days. No more painful crying, except a few short times. She is back on her original formula recipe with Polycose & Canola Oil only. She hasn’t spit up since Fri./Sat. and she has moved back up to 14/15 oz. per day the last couple of days. Back to cardiologist this Friday – hopefully she hasn’t lost any weight. She’s still strong as ever, when she’s rested, and wants to get up and go somewhere – she’s a mess. When I got home from work Monday she smiled at me twice – big smiles and that made my day! She’s been a good girl for daddy this week too – he feeds/gives her meds in the mornings and takes her to Susan’s (day-care provider) on his way to work. She’s growing, length-wise for sure – she can hardly fit in any sleepers because the legs are too short for her. The larger sizes fit her length-wise, but they’re a bit roomy for her little self. We have to keep her in sleepers at night because she refuses to stay under covers. And in the last week or so, when we put her down in her crib for the night, she rolls over on her right side to sleep – she’s a little mess and we’re loving her to pieces. Thanks to everyone for praying – she’s remaining very healthy and active despite her limited food intake. 15 days until surgery! Love in Christ, AJ
Saturday, May 14, 2005
Janna has really had a couple of tough days. She has been hurting somewhere and we think it's reflux. Although she doesn't spit up real often, she acts as if her throat hurts/like she is in pain. Took her to Ped. Thursday and he could not find anything wrong with her - said she looked good. He could not increase Zantac because of her size. We had gone to another formula recipe containing powder and early on she could not tolerate powder, so we think this may have been the problem. Took her off of it yesterday as she was same way 2 days. She has been in a little pain today but hopefully the powder will soon be out of her system. Today she has done nothing but sleep. Slept 10 hours 2 nights in a row and right back for 3 more. She is taking 2/3 hour naps during the day and today she is only waking to eat. This is unusual. She is usually lively during the day and plays more. We assume it's her heart talking. At least she's not burning calories. Will call cardiologist to see if this is typical and okay until her sugery. Nineteen days and we can't wait. Please keep her lifted to the One that will see her through. Thanks to everyone. God bless, AJ
Wednesday, May 11, 2005
The nutritionist came today and Janna weighed 8 lb. 6 ounces. I didn’t think she had gained – she just hasn’t been taking in quite as much per day. But at least she’s not dropped a lot. We are getting some Enfasure, made by Enfamil, for premature babies. It’s a powder that we’ll add to her formula and the nutritionist is also having us increase the Canola Oil amount. Yesterday her surgery was scheduled for June 2nd. Just 22 days to get fat. We pray that she will be able to at least maintain. She’ll have the surgery no matter what weight she is, but we’re hoping to gain a little bit more. We may not reach 11 pounds, but after June 2nd we are expecting her to take off. Since we increased her meds last Friday, she’s been much stronger – back to her old self more often. Hopefully she’ll start eating better soon too. She all but sits up on her own sometimes, trying to get to the bottle. But then she tires shortly after and just doesn’t eat much at the time. She’s averaging ~ 12oz. per day now where before she was ~ at 15. Please pray that she will be able to take more in. Back to cardiologist on May 20th. Will post more info soon. Thanks again for your prayers. AJ
Friday, May 6, 2005
What a long day we had yesterday – we’re getting the hang of traveling with a baby now. We were gone about 8 hours – first stop was at the Ds Clinic at Duke. Janna weighed 8 lb. 5 oz. there. She saw Dr. Worley who highly praised her pediatrician, Dr. Tayloe. We knew he was great but we found out more good things about him – he comes from 6 generations of doctors in his family, is a deacon in his church, and on and on and on. Everything with Janna checked out well – they did a heel stick for blood work – keeping a check on her thyroid and other things. She handled it well – better than when they draw from her arm – she hates the tight band they use on her upper arm when trying to stick a tiny vessel. Before we left, we were given 4 more appointments – whew!! She sees an eye doctor in Cary the end of June, back to Ds Clinic August 4th, one appointment is soon at the Children’s Hospital connected to Duke (where she was born) but I can’t even remember what it was for or who it’s with at the moment. The last appointment was on our way home – Dr. Worley was concerned that her liver was too enlarged and so he called her cardiologist and we stopped in Raleigh for a 2pm appointment. Her Cardiologist was NOT as concerned, but did increase her meds since her weight was up – she weighed 8 lb. 8 oz. for him. FYI – her liver function is normal – fluid/blood, from the heart failure, backs into the lungs, and from there, through the inferior vena cava (vein), it also backs into the liver causing it to enlarge. Cardiologist could still hear AV Canal and leaking valves. He said that the valves could still leak some after surgery but that she could be on medicine for that if necessary. We’re now waiting on a call from Duke to schedule her surgery – should be within the next 4 weeks or so with the same heart surgeon that performed Joe’s valve replacement in December. We’ll keep you posted.
Nutritionist is coming out again next Wednesday and Early Intervention case manager is coming Friday - to do a report - set our developmental goals for Janna. Cardiology appointment changed from 13th to May 20th. Thanks for keeping Janna in your prayers. She's a busy little angel.
I'm trying to post some recent pictures that are a good size - hopefully they will be right soon.
Friday, May 6, 2005
What a long day we had yesterday – we’re getting the hang of traveling with a baby now. We were gone about 8 hours – first stop was at the Ds Clinic at Duke. Janna weighed 8 lb. 5 oz. there. She saw Dr. Worley who highly praised her pediatrician, Dr. Tayloe. We knew he was great but we found out more good things about him – he comes from 6 generations of doctors in his family, is a deacon in his church, and on and on and on. Everything with Janna checked out well – they did a heel stick for blood work – keeping a check on her thyroid and other things. She handled it well – better than when they draw from her arm – she hates the tight band they use on her upper arm when trying to stick a tiny vessel. Before we left, we were given 4 more appointments – whew!! She sees an eye doctor in Cary the end of June, back to Ds Clinic August 4th, one appointment is soon at the Children’s Hospital connected to Duke (where she was born) but I can’t even remember what it was for or who it’s with at the moment. The last appointment was on our way home – Dr. Worley was concerned that her liver was too enlarged and so he called her cardiologist and we stopped in Raleigh for a 2pm appointment. Her Cardiologist was NOT as concerned, but did increase her meds since her weight was up – she weighed 8 lb. 8 oz. for him. FYI – her liver function is normal – fluid/blood, from the heart failure, backs into the lungs, and from there, through the inferior vena cava (vein), it also backs into the liver causing it to enlarge. Cardiologist could still hear AV Canal and leaking valves. He said that the valves could still leak some after surgery but that she could be on medicine for that if necessary. We’re now waiting on a call from Duke to schedule her surgery – should be within the next 4 weeks or so with the same heart surgeon that performed Joe’s valve replacement in December. We’ll keep you posted.
Nutritionist is coming out again next Wednesday and Early Intervention case manager is coming Friday - to do a report - set our developmental goals for Janna. Cardiology appointment changed from 13th to May 20th. Thanks for keeping Janna in your prayers. She's a busy little angel.
I'm trying to post some recent pictures that are a good size - hopefully they will be right soon.
Tuesday, May 3, 2005
Hoorray!!!!!!!!!! Last Friday Janna weighed in at 8lbs. & 7 ounces for the nutritionists. She gained 5 oz. in a week. Moving up to roughly 460 calories a day vs. 390 has really helped her move forward.
At times we all drift out on the sea of doubt but it’s days like yesterday that bring the Victory into clear focus. Little Miss Janna was 3 months old and had her first visit with CDSA (Children’s Developmental Services Agency) of Greenville. It was a long day but she was so good and even got to show off. The doctor that evaluated her was well pleased and could only hear a small heart murmur – she said, ‘I know the cardiologist knows what he’s doing, but I sure don’t hear much of a problem.’ She was surprised at how alert and active Janna was. The PT(Physical Therapist)/Case Coordinator was simply amazed – she had to adjust her work plan with Janna because she was well beyond what she expected. Both agree that she has very mild low-muscle-tone.
We know each child develops differently, but in the world of so-called normalcy, Janna is right on TARGET!
Here’s a summary of her developmental skills/functioning levels;
Cognitive 3-4 months
Communication 2-4 months
Fine Motor 3 months
Gross Motor 2-4 months
Self-Help 2-4 months
Social-Emotional/Coping 2-4 months
These were determined by play-time with the PT on a mat with various toys/rattles, etc. We also learned some new things that will continue to help Janna develop. At home we had been practicing a little lap game that Janna initiated a week or so ago. Little did we know that this was going to help her with the evaluation yesterday – she’s just determined to try and get up and do something/go somewhere, no matter where she is.
We want to give ALL the glory to God – He is the One working in this little angel’s life – as the PT put it, she is ‘simply amazing’ and we know why. God has a special purpose for her life and we’re having the best time watching her grow. Praises to Him for her current weight gain as well – we’ve worked so hard on that and now we’re seeing good results. We have another long day coming Thursday at Duke (Down Syndrome Clinic). We thank everyone that is praying for Janna – it sure is working and we couldn’t make it without you. God bless you all, AJ
Wednesday, April 27, 2005
Well, we had our first night away from baby girl this weekend. Joe was in a good friend’s wedding in Wilmington and the rehearsal/dinner was Saturday and the wedding Sunday. We started packing and taking things over to my parents’ house the day before we left (how much STUFF does it take!? – ALL of it). Janna stayed with them and did well – she did miss us though. Mama said that she kept looking at her real funny – she probably sounded somewhat like me and looked like me with short hair, but she knew it wasn’t her mommy. She even slept a 6-hour stretch for them Saturday night. When we got back to pick her up, she really perked up and those eyes got bigger. We had a nice time at the beach, but we sure did miss her. We’ve played around with the nipples and found a better way for her to pull cereal through in her milk. We’re still adding the Polycose and Canola Oil and she is getting along well with that. Her nutritionist is coming Friday and we pray she has gained a little weight. She is getting longer as some of her little sleepers are now too short. We have a couple of long day appointments next week – at Greenville on Monday and Duke on Thursday. There’s just not enough time to sit and hold her. I’ll be updating you on her weight hopefully by Tuesday of next week. Thank you all for your continued prayers for our sweet angel. Be God’s, AJ
Thursday, April 21, 2005 6:43 AM
Janna saw her cardiologist last Friday and weighed in at 8lb. 1oz. - but this is the scale that is off, so we guess ~ 8lb. 5oz. was more like it. Another Echo showed similar results with a little more leakage in her heart. The doctor can't increase her medicines until she gains some more weight. He was pleased with her gaining a 1/2 pound since we were last there on 4/1. He was also glad that a nutritionist is seeing her and helping with her weight. We've been released for a month - head back May 13th, at which time he suspects we will be scheduling her surgery.
Janna is eating pretty good, losing some at times, but overall is keeping most of her milk down. We are adding the Polycose to her formula as well as blended (powder) rice cereal to some bottles - when she is strongest during the day and can pull it through. The Nutritionist and Occupational Therapist came yesterday - she was 8lb. 2oz. - so she's either lost a little or the scale at Duke is now in tune with the others? Regardless, she's getting no where with her weight. We'll now add oil to her formula - Canola Oil/Olive Oil - any kind of cooking oil. She's taking in all the amount she can handle in a days time - so we're going to have to keep mixing in fattening stuff to her intake. The OT had us try another type nipple which we tried early on - it basically drowns/strangles her and so we are already back to old reliable (the type she started on in ICU). The OT did teach us a way to help support her cheek muscles while feeding so that she doesn't have to work as hard to pull in the milk. And we're back to 'snacking and snoozing' - no more 45 min. time limit feedings - we let her eat for 15/20min., take a break and eat some more. She basically eats all day. She is sleeping very well at night still. We shoot for 8:30 bedtime and the past 2 nights she's slept 9.5 and 8 hours. Seems we should wake her to eat but it's better for her rest and not burn calories the doctor says. We keep praying she will start gaining weight soon - we'll keep trying all we can and leave the rest to the Lord. He will provide. We thank you all for your many prayers. Be God's, AJ
Wednesday, April 20, 2005 9:39 AM CDT
This entry includes several updates from the past few months - for those unfamiliar with Janna's history.
Hello All, FYI - 'Janna' means gracious gift from God/'Macie' was my grandma's name
2/8/05
We made it home from the Duke Intensive Care Nursery last night about 8pm. Janna had a doctor's appointment with her Pediatrician in Goldsboro today at 1:00 so there's been little time to update just yet. She is soooo good - she has had so many poking and prodding at her - shots, IVs, etc. and she takes it like a champ. She is a good eater and sleeper. She's just perfect! Her little heart is doing well despite the large canal. They expected her to be less vigorous, have a hard time eating, etc. but she is surprising all her doctors. She is very alert and curious - she is glad to be home. They do expect to perform surgery to repair the hole in her heart within the next few months. Her preliminary Down Syndrome test results are positive but we have not heard from the official and final testing results to confirm this. She is God's perfect gift to us and so very precious. She's gonna be a tough little angel. Her other testing - Brain Ultrasound, CT Scan, Hearing Test etc. all were great. We are all very tired but thankful that God has brought us home. She cannot be around a lot of people/get in a crowd for 6 weeks per Duke orders. She cannot be around any children at all yet. All family members have to wash up before seeing/holding her. She should be strong and ready to meet people in a month or so. Thanks again to you all for your continued prayers for her - she is doing better than expected with eating and everything. We appreciate your concern and prayers and praise God daily for our new little miracle.
Talk to you soon, AJ, Joseph, and Janna
Hello All,,
2/17/05
We finally received word yesterday (after Janna's pediatrician got tough on the phone with 3 Duke doctors) that Janna does have Down Syndrome - it's not the 'translocation' type, but just a freak thing that happens - we could probably have 10 more kids and they would not have DS. We don't know exactly what all this will entail, but her pediatrician is very pleased and amazed that she feeds so well and that she is growing and doing well, even with the heart defect - all the many prayers, over the last months, are the answer - God really has His hand on her. We are researching for answers but mainly know that God makes NO mistakes and He sent this beautiful angel to us to love and care for and we will do just that no matter what challenges she may face on this earth. She is right on target with other newborns her age - amazing in itself. She is very active, alert, and gaining weight - was 7.7 lbs at the doctor yesterday - has gained an ounce a day since her last check-up. We are blessed to have my aunt working at Goldsboro Pediatrics - she has gotten us in the back door for each visit - so that Janna does not have to be exposed to all the sick kids in the waiting area. And the Lord gave us a beautiful, warm day to get out in yesterday - we don't have to go back until April now. Blood was drawn again to check her thyroid - still not in the exact range that they want, but it's looking good. Dr. Tayloe does not expect that she will have to be on meds for it - that her numbers may be elevated now because of the high dose of thyroid hormone I've been on during the pregnancy. They will check it again in 6-8 weeks to be sure her range is good. Despite her diagnosis, she is quite the opposite - not that they put different severity ranges on DS babies, but we know that God is taking care of her because she was sent by Him alone.
Her first cardiology appointment is March 8th at Duke. Will keep you all updated. Thanks again for your continued prayers for this little angel.
In His Love, AJ and Joe
3/9/05
Janna had her first cardiology appointment at Duke yesterday - she did really well - letting many different ones check her out, listen to her heart and perform an EKG. They did not do an Echo since she just had one while in ICU a month ago. She will see Dr. Milazzo in Raleigh (also Duke Dr.) next Wednesday. He will be her regular cardiologist - it will be a closer drive for us. They put her on Lasix to help remove fluid from her heart and lungs. They heard a 'gallop' when listening to her heart and wanted to start the Lasix just to stay ahead of everything. They were well pleased with her growth and vigor. The Lasix is precautionary - to make sure she doesn't get too tired to eat well. They are suspecting that when she reaches 11 pounds that she will be ready for heart surgery. Yesterday she was 8.2 lb at Pediatrician and 7.14 lb at Duke - so I guess she's ~ 8 lbs. At least we know she is growing, even if the scales aren't matching. Thanks for all your prayers - we'll keep you updated.
God bless, AJ, Joe, and Janna
Note: 'Traveling with a baby' - we have decided that we will not take her out, except for doctor's appointments, until she can feed herself, is potty trained, and can walk. What a day we had - we're learning!
3/18/05
Little Janna really needs your prayers. She has not gained any weight in over a week - she has lost a little. She is really tired and not eating well. Once again, she did well at her cardiologist appointment Wednesday. They did an Echocardiogram and she was very patient. This showed that her heart is worse than when she was born - her valves are leaking and the hole is still present. She is in more heart failure and oxygen levels are low - which is what the doctor wants - this cues him in on when to perform surgery (Dr. is guessing in the next 6-8 weeks). Dr. Milazzo increased her Lasix dose and also added another diuretic to both be given twice a day. She tries really hard to eat, but she tires so easily. I could only get 55mls in her this morning, after not eating all night (slept 7 hours - she's a good girl at night : ) She lost most of her last nightly feeding and I got about 20mls in her at midnight. Before, she was drinking roughly 100mls every 3-5 hours. Please pray that she will be able to eat well again. The doctor emphasized to us the importance of her gaining weight and avoiding any infection. He doesn't want any children to touch her, and adults that are/have been sick have to wear masks when holding/feeding her. We are going on the safe side and keeping her in until the weather is nice and the flu/colds/viruses clear up. We pray the Lord will intervene - we know His timing is best and pray that He will work and heal her of this defect. We contiue to ask and believe and pray His will be done. Thanks again for your calls, cards, gifts, thoughts, and most importantly prayers.
In His name, AJ, Joseph, and Janna
4/4/05
We were disappointed Friday at Janna's appointment. She had not gained any weight, but had lost an ounce. The doctor changed the way we prepare her formula to increase the calories (24 calorie formula vs. 20). He is also sending her to her pediatrician today instead of waiting for her 4/11 appointment. He wants him to put her on Zantac for reflux. I'm not so sure she has reflux, but she can't afford to lose any milk and this is happening occasionally. One of the most frustrating things we deal with is feeding a baby that wants to eat but can't - then you spend an hour or more getting 2-3 ounces in her and she looses it all. We know God brought her here for a reason and we are trusting He will take care of her. Please help us pray that she will start having an easier time eating and will grow. If the increased calorie formula and Zantac doesn't help, Dr. Milazzo will then increase her diuretics. We are seeing him every 2 weeks to keep her heart checked. The echo showed this time that she is still in Congestive Heart Failure and it's where he expected - not serious enough yet for immediate surgery. We thank you all for your prayers. Love In Christ, AJ
4/5/05
Janna weighed 8 pounds at Goldsboro yesterday - there seems to be a 4 oz. scale variation between Duke and Goldsboro. She has lost a couple ounces over the last few weeks but is still hanging around 8. Dr. Tayloe put her on Zantac 3 times a day and connected us with a Nutritionist out of Greenville. He also said that he was not against adding a little rice cereal to her milk. Hopefully she will be gaining soon. We know she is going to be doing well before we know it. She's such a sweet baby and deals with everything so well. We can't wait to see what special purpose God has in store for her.
Thanks for all your prayers, AJ
4/6/05
I had the best time feeding my baby last night. Janna is eating rice cereal from a spoon - sometimes she'll wiggle it around and swallow and sometimes we have to follow it with her bottle to wash down the rice - she really is hungry - she just doesn't always have the strength to keep pulling on the bottle. Her daycare provider tried this for the first time yesterday and Janna took right to it. She doesn't have to work so hard this way and boy did it stick with her - she slept 8.5 hours last night after two evening feedings of rice and milk. Resting well at night will help too - if she is awake and feels good, she is constantly wiggling and burning calories. A good night's rest after milk and cereal ought to help her put on some weight and give her strength for eating. She is burping better and not spitting up. We pray she will put on more weight soon. Back to Pediatrician and Cardiologist next week - we can't wait to see what she weighs. Thanks again for the many prayers - they are working and we know God knows what He's doing.
Will keep you updated, AJ
4/13/05
Janna weighed 8lb. and 1oz. at the Pediatrician Monday. She also weighed 8lb. 1oz. for the nutritionist yesterday. She is basically maintaining and not gaining. The nutritionist gave us a can of Polycose (fine powder of glucose polymers/carbohydrate supplement) to start adding to her formula. This along with the rice cereal (when we can get it in her - she fights it sometimes) and the 24 calorie formula should help her start gaining. She is not getting enough calories in the ~15 ounces she eats a day. She also told us to not feed her beyond 45 minutes at a time (it takes 1 - 1.5 hours sometimes) so that she isn't too tired for the next feeding. The nutritionist will be continuously working with Janna to get her weight up. I just received results from her blood work Monday for Electrolytes and Thyroid - Dr. Tayloe says that everything is looking GREAT!!! God is so good. We head back to her cardiologist on Friday.
Thank you all for you continued prayers for our little angel, AJ
Wednesday, April 20, 2005 8:34 AM CDT
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