God alone is Sovereign

1 Chronicles 29:11

Yours, O LORD, is the greatness and the power and the glory and the victory and the majesty, for all that is in the heavens and in the earth is yours. Yours is the kingdom, O LORD, and you are exalted as head above all.

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Tuesday, February 28, 2012

Congenital Hand Defect - Yep, hand

I took Anna Grace (and Zachary) to the orthopedic hand doctor today for Anna Grace's scheduled appointment. Her right thumb has been getting "stuck" (for lack of a better word) in a 90 degree angle and when it does she is unable to move it until I "pop" it back into place. I mentioned it several weeks ago to her pediatrician at her 2 year well baby visit and after a hand x-ray her pediatrician referred us to a hand specialist. So, today was that appointment.

As far as doctor appointments go, this was the easiest one we've ever had. The kids didn't even get out of the stroller and we were only there for about a total of 20 minutes. The doctor was very quiet and kind. He walked in and I told him what had been going on. He examined her hand (while she was sitting in the stroller) and diagnosed her right there. He dodn't even need an x-ray!

He diagnosed her with "congenital trigger thumnb" which is a congenital defect. Of course the only fix for this is surgery. After discussing Anna Grace and the upcoming year with him, it was determined the best thing to do right now is to wait and watch. He showed me how to "pop" it back into place the RIGHT way (which was not the way I had been doing it, oops)! He also said that if her thumb gets stuck and I'm unable to manipulate it back into place to just call him and bring her in and he would do his best to manipulate it back into place. There is a possibility that it could get "stuck" and that we wouldn't be able to fix it without surgery, but he said that was unlikely. Hopefully that will not be the case.

It is the thumb on her right hand and she is right handed. She doesn't have full use of motion with that thumb so it is likely that we will have to do something about it before she begins writing at about the age of 4 or 5. Not sure how I feel about any type of surgery which requires general anesthesia (which this does) outside of MUSC so when the time comes I might be finding a hand doctor in Charleston, but for the time being we're just going to wait.

So, all in all it was a pretty good appointment although as a Mom my heart just sunk when I found out that she needed yet ANOTHER surgery and that she has ANOTHER congenital defect. I'm just sad for my daughter. I'm sure the stress of the upcoming cath is probably factoring into my emotions of this diagnosis right now because truly it is not life threatening or urgent in any way. Just sad. Sigh....

As any Mom can attest, there is very little time to be sad and I am now switching gears and trying to come up with a logistical plan to get to Charleston... like making a hotel room reservation and getting the mountain of laundry done so my family has clean clothes to pack, getting the oil in my car changed and the tires rotated - oh and I am squeezing in a hair appointment tomorrow to get my roots colored so I don't go to Charleston looking like a skunk. Yep, there is still much to be done before Friday! I think I will be ordering take out for dinner tonight because I am simply not in the mood to cook! This is a rarity for me, but I think the occassion calls for it!

Sunday, February 26, 2012

The Joys of Quarantine

So we have been in quarantine now for 7 days in preparation for Anna Grace's heart cath coming up on Friday. What quarantine means to our family is that my hubby still goes to work but the kids and I stay home and away from people unless there is a scheduled doctor appointment.

The kids and I have been creative this week in trying to find things to do to keep us busy, entertained and away from too much tv (although we have watched more tv this week than usual). This week Zachary has learned to ride his bike without training wheels (sorry, no picture of that one since I was the one pushing him to get him going). Zachary also learned to climb the magnolia tree in the front yard. We of course made a trip to our local botanical garden - which is pretty much deserted in the winter time so not much fear of running into people there. We have also gotten desperate on cold days and taken to pouring white rice in a bucket and giving the kids measuring cups to play with. That one was kind of messy, but entertained both the kids for at least 2 hours. Totally worth the rice mess that had to be cleaned up.

As for sickness, my hubby did get sick this week which landed him in the doctor with a diagnosis of strep throat and an antibiotic. AG also got an antibiotic for something unrelated, but I was thankful because she started that BEFORE hubby got his strep. So far Zachary and I have remained well and I am very hopeful that the worst of it has passed.

I also got a call from MUSC this week saying that we had been bumped to second case for AG's heart cath. Since I'm not a newbie to the heart world I knew this was a possibility and I also understand that we have most likely bumped some other heart child in the past when AG was younger, but it's still hard not to be annoyed when they tell you no food or drink after midnight and that they most likely won't get started on my two year old until 11:00. AG, who is NOT a roll with the punches kind of girl is going to have a very rough Friday morning I'm afraid. Please pray for her to be easily distracted when she's thirsty and hungry and waiting! That being said, I completley trust the Lord's timing and rest in His soverignty in this even if is not what I would have chosen. The Lord is faithful and good!

I'm sure I will be posting again before our heart cath on Friday, but please do start praying for wisdom for the doctors, perfect timing, no complications, good pressures, ease with anesthesia, safe travel to Charleston, low anxiety for AG, for the family to stay well so we don't have to reschedule, patience for Mom & Dad, peace for Anna Grace.

Thank you friends for continuing to follow our story! Here are some pics from the last week! Enjoy!

Zachary and his leaf collection at the botanical garden

Zachary up the magnolia tree (is this an ER visit wating to happen?)

The kids playing in the bucket with rice. Yes, it is in my living room! They loved it!

If you've ever seen our family picture and wondered how this raven haired family ended up with a little blondie like Anna Grace - wonder no more.... here is Anna Grace with her Mee-mee. Yep.... they look just alike don't they?

Tuesday, February 21, 2012

Zachary the Super Hero

I have to say that Zachary was a terrific big brother today. I am very humbeled by the fact that I see God growing a very compassionate heart in him. Let me tell you what happened.....

Brian and I have decided that we would enter the kids into quarantine beginning Monday (yesterday). Anna Grace's heart cath is next Friday so with all the respiratory viruses going around right now we thought that missing a few weeks of 4K would be fine. So, starting yesterday Zachary is home with Anna Grace and I.

Today Anna Grace had a scheduled visit with her cardiologist for a sat, weight and blood pressurce check. Since Zachary isn't in school this week he came with us. Normally I always schedule her appointments in the morning because let's face it... it's easier to deal with one child at the doctor instead of two. But today I had them both. So, when the nurse called us back Anna Grace of course started by saying "no". Great...... Zachary being the people person that he is was happy to go with the nurse and chat with her about his name, age and the bag of super heros he was carrying.

When the nurse asked Anna Grace to step on the scale she said "no". Zachary asked if he could do it and with his normal excitement he said "Watch me Anna"! So, we let him. After Zachary got weighed Anna Grace wanted to do it too. (29.6 pounds). Next was checking her Oxygen saturation level. She didn't want to do that either, but Zachary did (his was 99) "Watch me Anna". Then of course Anna Grace wanted to do it as well (hers was 77). Next was blood pressure. Now, here's where it gets sticky..... I'm not sure we've ever had an accurate blood pressure on Anna Grace and I wasn't sure even with Zachary's coaxing that Anna Grace would do it. So, Zachary went first and then Anna Grace stuck her little arm out to have her blood pressure taken too. She didn't wimper, cry or even pull her arm away. She stayed quiet and still the entire time. Wow! It was the smoothest appointment we've ever had. She didn't have an echo scheduled for today, but I feel pretty certain that if we had done one on Zachary first she would have let us!

So, I was very thankful that Zachary was there today and that he is so sensitive to how scared his little sister is and wants to help her. I truly am thankful for the compassionate heart the Lord is growing in him. So today, in my opinion, Zachary was a Super Hero!

As for Anna Grace, she doesn't have to see the cardiologist again until after her heart cath. Her next appointment is Tuesday with the hand orthopedist. You can bet I'll be taking Zachary with me!

This was taken at the cardiologist office today. Zachary is holding up two of his Super Hero Men and Anna Grace is pretend talking on her Princess Phone!

Tuesday, February 14, 2012

Just a Quick AG Update

Just a quick update on Anna Grace. Since she has been satting in the 70's Dr. R wants her to have a sat and weight check this week and next. AG also has Synagis injections on Friday (ugh) AND we have gotten our appointment with the orthopedic hand doctor for AG. We have a BUSY couple of weeks when it comes to doctor appointments. I will post and let you know the outcomes as we head to each of these different appointmnets. Please continue to pray for Anna Grace as she has a LOT of doctor anxiety and we have lots of doctor appointments coming up. Thank you friends!

Saturday, February 11, 2012

Pictures and Adventures

Even though we have a heart cath coming up and it is serious business, we are not just sitting around the house in the duldrums. No, we are continuing to live our life and make memories together as a family. Here are just a few of our most recent everyday adventures!

Mommy's Little Helper! Over the last few weeks Anna Grace has really shown her personality as a helper. She helps me unload the dishwasher... everyday. She helps me sort and do the laundry.... everyday! I can not clean the countertop without her wanting to "help" nor can I sweep the floor without her wanting to "help". This is my first expereince with a "little helper" as Zachary is not inclined in this direction at all. If you are a Mom of a "helper" you know that help from a 2 year old is really more work than help, but I don't want to discourage her enthusiasm so now I just determine that it's going to take twice as long, but ohhhh the memories!!! So sweet!

Last weekend Zachary was invited to a birthday party at the Kindergym at the local YMCA. It was so much fun. They had a teacher there who set up obstacle courses and races and had the kids doing all sorts of fun physical activities. I was throughly entertained and Zachary had so much fun. This is on my to-do list of birthday parties for my kids in the future!

The abovementioned birthday party was for a little boy and it was a military/army themed party. The Mom of the birthday boy gave out goody bags at the end of the party to all the party goers and the goody bags were military themed as well. See Zachary sporting his aviator sunglass, army green watch and in case you can't tell that's an airplane whistle he's holding to his lips. What a great goody bag!

This last photo is of Anna Grace at her 2 year well baby appointment. She looks relatively happy because we had just gotten there and she hadn't seen the nurse or doctor yet. Things quickly went downhill after this picture was taken, but for just a brief moment she was pretty happy. We did find out at this appointment that AG has to go see a hand specialist due to her thumb dislocating 3 times in the last 3 weeks. Hmmm.... wonder when we're going to fit that in with our heart cath and open heart surgery......

Wednesday, February 8, 2012

Charleston Coming Up.....

As I mentioned in a previous post Anna Grace has a heart cath coming up. Earlier this week I received a call from MUSC to schedule Anna Grace's heart cath. It's hard to explain the feeling you get when you see MUSC come up on your caller ID, but it's kind of like the way your stomach feels when you're riding a roller coaster and your stomach just drops. Yep, it feels just like that. You know it's coming up, but your gut reaction is still the same.

Nevertheless, her heart cath has been scheduled for March 2 at MUSC in Charleston. Our plans right now are to head down the night before and rent a hotel room close to the hospital. Right now she is first case so we need to be at the hospital at 6:15 am. Ideally she will be in the hospital all day and get released that night, but there is a chance she will need balooning or coiling in which case it would require at least an overnight stay.

So, the ball has begun rolling toward the inevitable Fontan procedure. We are trusting God with the timing and the outcome of the cath. Please start praying with us that the Lord will calm Anna Grace as she is SO anxious in medical situations and that there would be no complications in this very delicate heart cath on this very small baby.

Thank you friends for continuing to follow our story and support our family. It means so much to us!