Time indeed marches on. You may have noticed that I've added a spot for Paul Cardall's benefit concert. Paul was born with Tricuspid Atresia as well as some other defects and has had many surgeries during his lifetime. I've met Paul, and he is currently awaiting a heart transplant. He's a member of the Intermountain Healing Hearts support group that I belong to. Anyway, please support the concert if you're local, or stop by his blog if you're not.
I was able to attend the funeral services for Mercydez, and it was truly a blessing to me. Nic and Ashley had such a blessing in their little angel. You could feel her presence there, the Spirit was so strong. I am still struggling with their loss and they continue to be in my prayers.
Things continue on in my life. Sometimes I start feeling like my life is so boring, because I'm in a routine, but it's far from boring! The stresses continue and so do the blessings that come from the trials. Ben had another seizure. Right now I'm not sure why. The doctor wanted me to give him a multivitan with Vitamin D and his neurologist wants us to follow up with him in a couple of weeks. If the seizures continue I may just have to adjust the dosage on his medication. It's dosed by weight and since he just went through a growth spurt, he may be outgrowing the dose prescribed to him last November. The kid's a rock! He weighs 66.4 lbs! He is one solid little guy! Other than the seizure, he's doing great and loving kindergarten. He's slowly learning how to read. He's struggling a little bit, he's convinced that the pictures tell the story, and so he doesn't want to look at the words, but we're working on it. He'll get there.
Elaina is doing okay. I was able to go and visit her today. She's caught something, but we don't know what yet. Just today she started coughing and having a runny nose. I'm not sure if the cough is from the mucus or part of the bug. She would cry each time she coughed (which made me wonder if she has a sore throat), and wanted to just snuggle and sleep. Her nurse finally gave her some Tylenol and that seemed to improve her mood a little bit. We'll be keeping a very close eye on this one, that's for sure! Her saturations were still very good today, she was 84-87% the whole afternoon. Maybe it's just more teeth???????? I hope that's all it is! She's still tolerating her feedings very well. We have an appointment with her GI doc next Wednesday.
Well, that's it for now! I hope everyone has a wonderful week! Thanks for all the love and support and thanks for checking in on us!
Hugs,
Hollie, Ben and Elaina
My cute little Elaina Bug
Grandpa's favorite smile!
Ben and Elaina, my luverbugs
Someone loves her big brother!
5 Days Old
Mom's First Kiss
Di George Syndrome Families
About Us
- Hollie
- North Salt Lake, UT, United States
- I am the lucky mother of two extra-ordinary children. My oldest is Ben. He is 10 years old and has more energy than even he knows what to do with. He is in 4th grade and is growing faster than I can keep up with him. My baby is Elaina. She was born in January of 2008. Elaina was born with some serious health problems. She has a Complex Congenital Heart Defect that includes: Pulmonary Atresia with an intact Ventricular Septum, right aortic arch, a leaky tri-cuspid valve and a large sinusoidal connection between her right ventricle and left coronary artery. She also has a chromosomal disorder called DiGeorge Syndrome or 22q11 deletion. In plain English, she was born with a rare but serious heart defect, as well as some other challenges. She had a bi-directional Glenn done in June of 2008. She is fed by g-tube, and continues to grow and amaze the doctors with her strength. She spent 18 months inpatient at South Davis Community Hospital after her Glenn procedure. She finally came home in April of 2010 and is thriving! She's in pre-school and loving life! Oh the adventures we have!!!!!
Family Photo
Mother's Day at home
Ben
1st Day at Tae Kwon Do
Elaina 4 months old
May 11 2008 - 1st Mother's Day
9 comments:
Hollie,
Is Elaina being seen in the dysphasia clinic at Primary's? That's where the GI doctor, dietician, and feeding therapist see her in one visit. We just did our visit with them today and I'm sure that Elaina would benefit from it. You need to contact Lena to get an appointment.
Oh, I hope that Ben's medication helps! That is too scary.
I was only able to go to the viewing, but Nic and Ashley were holding up way better than I did when I saw her. What a blessing Mercydez was. Are you going to Paul's concert? I ought to meet up with you if you're going.
Good luck with the "routine" (which your life is anything but!)
What is funny is I have seen you more in the last week than I have in the last few months! I always love talking to you, it does the soul good (in so many ways!) You are doing amazingly well and balancing better than most circus acts can!
I hope it's just more teeth. We don't need the sickies!! It was good to see you and catch up a bit!
I almost fell off my bed when you said that your life seems boring...I'm glad you quickly came to your senses. :0) I know what your are saying though...you get in the routine and just...do it. Everyday.
I'm praying that your sweet little one does NOT have any bugs....and that she has just been "off".
Give her a squeeze from me!
Praying that it's just teeth and that it's as simple as that. Sorry to hear about Ben's seizure, too. That has to be scary as the mama. Praying for both of your cuties diligently!! Have a good (boring..ha!) week. xoxo
Hollie its good to hear things are going well, for the most part. I hope the medicine works for Ben, and that it's just more teeth for Elaina. You are such an inspiration to me. Thank you!
Liz
Hollie, Elaina is still a miracle to your friends in the Park 4th Ward. Your life is anything but boring. We don't know how you keep up with all your work and two sweet children. Our prayers continue for you, Ben and Elaina. Have you found a place to live inthe Bountiful area? Much love and continued blessings! Jim
I just wanted you to know that we are still praying for Elaina, and I hope she gets through this (bug?) hopefully its just teething. Your a great mom and a amazingly strong person! I hope Ben's medication works for him.
Hugs,
Mike & Family
IHH
Poor Ben! I hope the adjusted dose will do him some good! Keeping our fingers crossed that Elaina is just teething! If your life is boring... I want mine to be dull, pathetic, or ultra-boring! You're a crazy woman, I don't know how you do it all! Good luck!
Camille
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