Saturday, December 27, 2008

Let the Adventures Begin!!!!

WOW!! It's that time! In just a couple of hours I will be on my way to France and then on to Africa.

I have to admit, I am having a hard time keeping my emotions at bay. I am completely excited for this experience and yet I am having a VERY hard time saying goodbye to my family.

Thank you so much for all of those who have helped make this trip possible. I will try and post while in Europe but if I can't, I will for sure post more in 2 weeks upon my return.

Wish me luck!!

---Allison

Christmas Followup

Christmas, as always, turned out great this year. The kids loved all of their gifts and we enjoyed the time that was spent together as a family.

Tim's sister, Liz, and her family spent a few days with us as well as his cousin Chloe. It is always nice having them stay with us. Whether Tim admits it or not, he gets lonely being the only one in his family still here in Utah. His loneliness tends to show more around the holidays. However, just spending some time with his family really seems to fill up his bucket.

My pictures will be non existent in this post, not because I didn't take any pictures, but because I took them on the SD card that is now in Emily's camera and I can't find it at the moment. So, when it is found I will have to post some of our Christmas pictures.

I hope you all had a Merry Christmas. We love you all.

---Allison

Monday, December 15, 2008

Christmas Village

One of our family traditions is to go up to Ogden and visit Santa at the Christmas Village. The kids look forward to it every year. We always get hot chocolate to keep us warm and there is usually a Christmas performance to entertain while we wait. This year Ethan was actually able to get out of the car and "sit" on Santa's lap. However, as you can see in his picture, that didn't go over very well.




Off the subject, it's less than 2 weeks before I will be in Africa. I've decided that I will get my "pay it forward" gifts while I am there. I am excited as to what I will find. I hope you are all enjoying your holiday season.
Merry Christmas!
---Allison


Friday, December 12, 2008

The Winners Are...

Yeah! So the winners of this game are Emily, Brynn, and Rachel! What I need you to do next is to email me with your mailing information so that I can send you a gift in the mail.

Now, I am also bending the rules a little bit and I am going to ask the 3 of you if you have a preference. I have not bought anything yet because I wanted to see who my winners would be first. So, with that being said, you have a choice to make. I can send something off in the next couple of days and have it to you by Christmas, OR, if you are willing to wait a little bit, I will get something for you while I am in Africa, but you won't get it until mid January.

So, send me your contact information and gift preference at allisoncurtis19@hotmail.com. I will let you know what the decision is when I hear back from everyone. Thanks for playing!!!

---Allison

Wednesday, December 10, 2008

Do You Want to Play Along?


A few weeks ago I was checking in on one of our heart friends and "Gavin's Mommy" had a fun post that I wanted to participate in. Basically, the first 3 people to make a comment on that post would receive a small gift with the promise that they would continue to pay it forward. This cute ornament is what I received in the mail a couple of days ago.
So, now it is my turn to "pay it forward." Would you like to receive a fun gift and then give a gift in return? If you would like to participate, here are the rules.
THE RULES: The focus of this is to do an act of kindness without expecting anything in return other than the recipient will, in their turn, pass the kindness along and "pay it forward."I will send a small gift to the first 3 bloggers who post a comment on this entry. In turn, those three will post this information and the game will continue!! The little something you send can be something you made, bought, were given or found, anything you want!! Just a gift that will make the person's day!!
If you are interested in participating, simply be one of the first 3 bloggers to leave a comment!! You have to promise that you will then post about this on your blog, link back to me, and then send something to the first three people who sign up to play along through your blog. Doesn't this sound like fun!!??
Don't be shy. In fact, here is a special invitation to all of you lurkers who never comment. Now is your chance to make yourself known and say hello! :)
Anyway, let the games begin!
---Allison

Saturday, December 6, 2008

Home for the Holidays



My oldest brother Bryan has spent the last 6 months in Saudi Arabia (which he volunteered to do). This is not the first time that he has served our country and I am very proud him and his service. (Also in the the top picture on the left side is my brother Adam who served 6 months in Iraq about a year ago). I am very proud of them both and I am happy that we can all be together this year for the holidays.
---Allison

Wednesday, November 12, 2008

I'm Feeling Guilty

I can't believe what a slacker I've been lately. I just hope you have all been as busy as I have been and haven't noticed my extreme absence. These next couple of posts will simply serve as quick updates. Hopefully with the weather getting colder I will have more time to leave comments on all of your blogs and to keep mine up to date.

---Allison

Costumes

Gavin wanted to be Yoda this year but we were unable to find a costume quick enough. We did find this Ninja Turtle and Gavin LOVED it.

Spencer is quickly changing from a child into a teenager. He's had the idea of being "Slash" for a few months now. We couldn't find a long curly wig, but I think that this one worked out just fine. A few sentimental metal heads commented on how his costume was the best of the night.


Ethan looked really cute in his Darth Vader costume. However, when he was sitting in his stroller, you really couldn't tell what he was supposed to be. He refused to wear the "helmet" hat that the costume came with so there were times he just looked like he was wearing black pajamas.

Miss Emily really wanted to be Princess Leah. We added to her buns to give her that distinct look. She thought she looked pretty fabulous!

Fall Fun

These pictures were taken on one of the last warm days this fall. We had fun spending time as a family eating lunch at the park, playing on the playground, and rolling in the leaves.








Thursday, October 9, 2008

First Duck Opener

So last week Spencer went on the duck opener. He had a fantastic time and came away with his first bird. All he could talk about was how fast this small duck was and how everyone was taking a shot at it (but he got it!). He did say that he felt bad for just a moment but was ultimately very proud of himself. He put the meat in the freezer and wants to make some duck jerky out of it when the hunting season is over.

---Allison

Friday, October 3, 2008

Random Updates

So I have to say that I am getting SO excited for this trip to Africa. I received my passport in the mail a couple of days ago and when I checked my e-mail this morning there was finally some information for the trip (like immunizations and my VISA application). There was also some information about our travel plans with dates and flight numbers and times. I was kind of dragging my feet, but yesterday I finally sent off some letters requesting donations. I will have to wait and see what kind of response I get from those. Hopefully I will have some interest generated because as I was reading through all of the necessary costs, it sure added up quick. It definitely seems like a lot to do to get ready, but the closer it gets, the more excited I am.

As far as the family goes, we are all doing great. Spencer got his hunting permit and went on the youth duck hunt last week. He is also going to out with my dad tomorrow morning for the opening duck hunt. He seems to really enjoy getting out and being one of the "guys". Tim can't go on this one because I have to work this weekend, but he went last week and there will be plenty more opportunities for him to go.

Baby Addison is continuing to do really well. She is simply just the cutest little thing and her family is so proud of her. We are simply waiting for her to eat a little better before she can come home. Hopefully she can get this down and will be home soon.

Austin and his family just came home from his Disney World trip granted by the Make a Wish program. It sounds like they had an amazing time and were spoiled rotten. I am sure that the memories will go a long way and won't be forgotten any time soon.

I just wanted to say thank you all for all of your comments, love, prayers, and kind words of support. They really do make a difference and are very appreciated. I hope you all find yourself a great weekend!

---Allison

Thursday, September 25, 2008

What Are The Odds?

Have you ever heard that it comes in 3's? Well, I hope that is true.

You all know about Ethan and his congenital heart problems and all the challenges that come with that. Also, I wrote a post a few months ago about my my sister Karalee's son Austin (who is 7) who was just diagnosed with Muscular Dystrophy. He actually got to make a wish last Saturday through the Make a Wish Foundation to go to Disney World. It was a very special and emotional afternoon. It was also a little bitter-sweet knowing that Ethan will be granted a wish one day when he is older. Although the Make a Wish Foundation is truly an amazing organization, you never want to be in a position to use their services.

Anyway, those were numbers 1 & 2. My brother Darren and his wife Jenn just gave birth to a sweet little girl on Monday night. I was in shock to hear on Tuesday morning that she was being transferred to the local children's hospital for surgery. It turns out that she has Downs syndrome, an imperforate anus, and an AV canal heart defect. She had surgery to create an ostomy on Tuesday and now she just needs to grow for a few months until she will need open heart surgery to correct her heart defect. I was able to go up and see her last night and she is just beautiful. She is also doing amazingly well.

Darren and Jenn have been such an example of strength and are handling it all much better than I would have. They have both said that the Downs syndrome is not a big deal but were both pretty upset when they found out about her heart defect. Of course they are feeling the array of crazy emotions that come with ALL of this but they really appear to be keeping it together. I just know what a mess I was with Ethan and they have shown much more strength than myself.

So, honestly, what are the odds that 3 completely different medical conditions happen in the same family when there is absolutely NO family history of ANY of this on either sides of our families? I am not sure what the odds are, but I do feel that it is no accident. Looking back at my experience with Ethan, there were countless things that were prepared for us before he was even born. I feel that these children have chosen us and trust us to love and care for them in our homes.

Now, this is not to imply that all the other children aren't special as well. I just know that these children are here for a reason and that our family is better because of them. I also know that it is a privilege to have them in our family and we have had and will continue to have many blessings because of them.

----Allison

Thursday, September 11, 2008

A New Addition?



Again, I am not pregnant. We did in fact get a dog. We had a family dog about 2 1/2 years ago who we all loved but she broke her chain and got hit by a car. Ever since then the kids have been BEGGING us to get another family pet. We've been putting off getting one until our yard was in and had a fully fenced yard so that we wouldn't risk this happening again. The problem is, we've been telling our kids that this would be done for about 2 years now. (When Ethan was born, it threw off all of our timing to get any major projects done.)

The topic has seemed to die down at times, but it has recently come up in full force. Several factors had played into our decision to finally get one. The first being that I really do feel that the kids have been patient with us putting it off for so long. The second being that Gavin has a tendency to want to leave our house (despite the extra locks we've put on the doors). We felt that if he had a playmate at home, that he might not feel the need to find a friend so intently. And thirdly, Ethan is in LOVE with dogs. Anytime the neighbor's dogs bark, Ethan barks and wants us to hold him at the window while he watches them. It seemed pretty pathetic that his only interaction was through a window, looking over a fence into 2 caged dogs next door. So, needless to say, Tim and I decided that we would take the plunge.

We started with a dog named Rex that we got from an adoption agency, but after only a couple of hours at our home, we realized that it wouldn't work out. He played very aggressively and didn't know his limits when it came to biting. He bit hard enough to give Tim bruises and scratched up all of our arms. He was a year old and didn't like having limits placed on him. The first time he bit me was when he was chewing on my throw pillows on the couch and just blankly stared at me when I told him to get off the couch. When I tried to guide him off by his collar he bit me several times. We had hoped that after getting used to us, this would stop. Although it did slow down after a couple of days, as soon as you played with him he would start biting again. It was very disappointing that it didn't work out and the kids were devastated when we had to take him back.

The good news is that this isn't the end of the story. On Tuesday, we picked up a sweet little beagle named "Annie". We bought her from a guy in Park City whose landlord wouldn't let him keep her anymore. She is about 9 months old and is super cute and friendly. She loves to play (and she doesn't bite). Her biggest problem is that she knocks Ethan over to lick his face. So, we have been working with her not to do this and just in this short time, she is doing much better. She has also had a few accidents in the house, but we were told she was housebroken, so I hope this will resolve in a few days as she gets used to her new surroundings. I was meaning to get my carpets cleaned anyway, I guess I will just have to wait a few weeks.

Anyway, the kids absolutely ADORE her and I feel she will be a very spoiled and loved dog.

---Allison

Wednesday, September 10, 2008

A year ago today...

Autumn has always been my favorite time of year. I love the crisp air and the changing leaves. I love the fall holidays and starting of school. There is just something about fall that brings a calm feeling over me.

The other day as I found some quiet time and was reflecting on my life, I realized that exactly one year ago today, Ethan went in for his 2nd surgery. It brings back so many memories when I think back to all that has happened during this time. The majority of these memories are happy ones and continually remind me how very blessed we have been as a family.

As well as looking back over this last year, my mind wanders and I can't help but think forward to the events destined to take place next autumn. We are currently in a "quite period" when it comes to Ethan's health. True, he's had some small issues, but its been manageable and I guess that is expected when you only have half of a heart. And although (so far) it has been a quiet year, as this next year progresses, Ethan's health is expected to decline as he grows which will indicate when his 3rd surgery will be needed. We've been told by our cardiologist that even if he doesn't grow out of his current "plumbing" by then, we should expect to have his Fontan surgery next fall.

Typically, Spring is associated with new beginnings. However, as much as I dread his next surgery, I am grateful that it will be the Fall which will bring Ethan another chance to live a more "normal" life.

---Allison

Thursday, September 4, 2008

Check it Out!

So it is still under construction but we now have the basics of our Aid in Africa blog up and running. After creating this new blog with my friend, Carie, it makes me that much more excited for this amazing opportunity. I hope you find it interesting and will follow along with our journey.
---Allison

Friday, August 29, 2008

My Fun Announcement!

So for all of you who thought I might be pregnant, I am sorry to disappoint. The reality is that I have actually been invited to go to Mali, Africa on a volunteer humanitarian mission.

Every year a group of OB/GYN doctors and nurses (through the Utah Alliance) travel to Africa and perform much needed surgeries on women. Prior to surgery, these women are shunned by their communities because their "female" conditions are so severe. They simply don't have access to this type of medical care and services on their own. I really look forward to giving of my time and services.

So, needless to say, I am totally excited (and yet also very anxious/nervous). A good friend of mine has volunteered the last couple of years and has said that it is an absolutely life changing experience. And obviously since hearing her stories, I've always wanted to go. However, after Ethan was born, I never thought that this would actually ever be an option for me. The crazy thing is, is that I didn't even know my friend was going this year. We were simply talking about something non-related when the topic came up. And, it just so happens that this year my friend was put in charge of finding another nurse to go. She asked if I would be interested, and after discussing it in detail with Tim and my parents, we decided that this was an opportunity that couldn't be passed up.

Now as with everything, there is a down side. There is obviously the cost that will be involved (as a volunteer you are financially responsible to get there as well as EVERYTHING you need while you're there). But, the part that makes me the most anxious is that it is a FULL 2 week excursion. I have NEVER been away from Tim that long, let alone my kids. It is slightly reassuring that Ethan is stable and in between surgeries, but I hate the thought of leaving ANY of my family for that long. It will definitely be an adventure as well as a sacrifice for myself, my family, and my parents who will be helping while I am gone.

As far as the time frame goes, we will be leaving a few days after Christmas, so I will have a little time to prepare (but not much considering all that I need to do). Also, I am planning on sending out letters to local businesses in an attempt to raise money to offset some of the costs of the trip. As awkward as this may be, I am hoping that they will see it is for a valuable and needed service. (If you know of any that might be interested/willing, please let me know)

Anyway, so that is my fun news. I am working on creating a blog with my friend's pictures and experiences from the last 2 years, and then I will update it when I can with my own stories and pictures. I will create a link to it when it is up and running.

---Allison

Thursday, August 28, 2008

Pictures as Promised

This is Ethan's 2nd plane ride. He came with Tim and I to Las Vegas when we went on our weekend get away. I know I am lame, but I still have a hard time leaving him. We had a great time and Ethan loved all of the 1 on 1 attention.


This was taken at the MGM Grand. This lion display is right in the middle of the casino. I don't think Ethan was quite sure what to think about it. At times he was intrigued and at times he looked concerned.


While the kids are off track, we decided to get a family pass at the zoo. I was feeling adventurous and (by myself) took all 4 kids for an afternoon. Ethan loved the animals and would scream (literally) with delight at each new display. We went to the bird show which was also fun for the kids. With the exception of one of Emily's melt downs (over a stupid map I might add) it was a really fun day. I think we will be going often this year.


While I was feeling adventurous, I also took the kids to my parents cabin for 4 days. (Again, by myself, Tim had to stay home and work). My parents did come up for 1 night which was really nice. The kids and I had several scavenger hunts, rode 4 wheelers, watched movies, and played lots of games. In this picture, we were eating lasagna for dinner and Ethan insisted on feeding himself. He is definitely finding his own little personality. We really had a lot of fun.


Gavin (as well as all of the kids I guess) have developed a fascination with my Ipod. Gavin will find it and have me play the song "We're not gonna take it" by Twisted Sister. He is such a funny kid.

I don't know why Spencer didn't make it into any of the pictures. He tends to wander off and do his own things at times. He did want me to take one of him on the 4 wheeler at the cabin but it was too dark when he asked. We decided to take one the next day, and of course we were having to much fun doing other things, we both forgot. Oops.

----Allison

Tuesday, August 26, 2008

Loser!

I completely admit that I have been in a blog funk. Nobody but myself to blame. And really, there is no good reason. We have been really busy, but that should just give me more to write about. Right? Also, I have been very poor about leaving comments on all of your blogs. I do read each and every one and really have no excuse. I am sorry. I will do better.

Anyway, since the last post (over 1 month ago, I know), the kids have started school and have already gone off track (they are in year round school). They return back next Tuesday. I really like their teachers so far this year and hope that I am not disappointed.

While off track we have tried to keep busy. The kids and I spent 4 days at my parents cabin. We bought a year pass and had a fun day at the zoo. And Tim and I spent a 4 day weekend getaway in Las Vegas. I do have pictures of all of our adventures and will post them soon.

I also have some REALLY fun news that I will post about in a few days when I have a few more details. You'll have to stay tuned. I promise I won't leave you hanging long. I will update soon!

---Allison

Friday, July 18, 2008

Echo Results


So today Ethan and I went up to PCMC to get another echo to check out Ethan's heart function. I took my camera thinking I would get a cute picture but unfortunately he was very squirmy and I had to help hold him down. So this was taken just after.
But anyway, after talking with our Cardiologist, he says that there is improvement in Ethan's heart function. Our first echo was labeled "below normal", our last echo was " low normal" and today he said he would put us in the "normal" category (for HLHS hearts of course). YEAH!!!

Also, he increased his Enalapril again and said that we didn't need to go back for 6 months! Can I hear another YEAH?!?!?!

I knew that I was nervous going into this appointment but I guess I didn't realize how much until after it was over. I definitely felt relieved while in the office talking with the MD. But I quickly found myself very emotional on the drive home. I guess it just takes some quiet time to let everything sink in. I am pleased to say that the tears today were of relief and gratitude.
I am continually amazed and touched by all of the blessings that I have in my life.
What a roller coaster ride!
---Allison

Monday, July 14, 2008

By Request



So, I understand that I need to post more pictures (thanks for the suggestion Alison). How are these blue eyes for ya?

---Allison

Friday, July 11, 2008

What's My Deal?

OK, so I finally taped Ethan walking but now I can't seem how to get it from the disk to our computer. So, the truth is, you may never see it unless I can pin down Tim to see what I am doing wrong.

This last couple of weeks have been fun. Tim's brother Matt and his family came up from Texas and stayed with us for about a week. We did a lot of fun things like fishing at the fish farm (we actually did this twice), spent an afternoon at the pool, enjoyed 4th of July festivities and fireworks, and played lots of Guitar Hero. We had a great time visiting and the kids loved seeing their cousins. They just left on Monday and we already miss them.

Since then, things haven't really slowed down much. I've been trying to keep up on the house (which seems nearly impossible when the kids are out of school), and if we get at least some of the basics done, then the kids and I have been trying to do some fun things. Today we went to the dinosaur park up in Ogden and we went to see a movie on Wednesday. This week I also had to attend scout camp (I am a Webolos leader). I have to admit that initially I wasn't all that excited about it (I hate thinking about making arrangements for all 4 kids for an entire day), but it turned out to be a lot of fun when I got there.

It has been a good thing that I've been keeping busy because if not, I think I could easily find myself in a slump. My poor kids have been yelled at more this week than they have in a long time. I find myself edgy, easily irritated, tearful, and frustrated. However, before you start feeling too bad for them, you should understand that they have not been innocent bystanders. Emily and Gavin have been so naughty lately! Gavin can get away with it because he is only 3, but Emily and I have been really butting heads. She can push my buttons quicker than any of my other kids and she doesn't know when to stop. I really have a hard time deciding if it's a girl thing, if she is at a difficult age, if she simply has a strong personality, or if I am just an inept mom who doesn't know how to discipline or relate to her. Regardless, I am scared for her teenage years.

I don't think that it helps out that I've been stressed about Ethan's last echo results. He goes in next Friday for a follow up echo (not a sedated one) to see if the med changes have helped his heart function. It just has really been in the forefront of my mind that you never know the future of these little heart kiddos. We just know of a lot of these little heart babies that are struggling right now and sometimes it becomes too much to think about. I even recently read about a little HLHS girl who sailed through her 3 surgeries and was the successful "poster child" for HLHS kids. It was only a month after her 3rd surgery that she had a stroke. I can't stand that anything can happen at any time.

I've been thinking a lot lately about how I've started taking things for granted again. Our overall health has been really good and when things are not bad and right in my face, I tend to turn a blind eye and pretend that everything is OK. I don't like to constantly think about what the next day could bring. I totally fear that something will happen and I will regret the time that I wasted watching TV, cleaning, napping, or yelling at my kids. I realize that these are all normal activities in a day, but I also know how it feels to pray for just one more day with your child. I don't live up to my own promises and expectations of the days and experiences that I would enjoy knowing that our time may be limited. I can't seem to find the balance of living a "normal" life and living one with no regrets.

Anyway, I could also just be hormonal (you never can truly rule that out when you are dealing with a woman, right?) I just know that being a heart mommy is REALLY hard. I have a hard time sorting out all of the emotions (both good and bad) that have come with this unknown territory.

I am sorry that this post is so long and I appreciate any of you who have stuck with it long enough to get to this point. One of these days I will find some balance (it will happen, won't it?).

I don't want to be one of those depressing people that no one wants to be around (or read their blog), so I will end on a positive note and simply say that I love you all (really, I do!)

---Allison

Friday, June 27, 2008

Oficially Walking!!

OK, so Ethan didn't just start walking today. He actually started trying it out a couple of weeks ago but it seems that he has now gotten a hold of it and tries to walk everywhere. He is still in that tipsy stage where you hope he doesn't fall and break something. But he is definitely proud of himself and can walk the length of any room and even on our squishy bed.

I wish his developmental testing had been this week instead of 2 weeks ago because I know he would have scored a lot higher. He was right on target for his cognitive development (which I thought he would be lower because he only says one word) and he was at an 11 month old level for his motor skills (he was 13.5 months old at testing). I was really surprised because I would have placed him higher on his motor skills and lower on his cognitive. I know that his comprehension is good, but I do worry about his speech being delayed. She reassured me that this is normal after having major surgery so soon after birth and then subsequent surgeries. Also, she said he scored lower on his motor skills because he had only been walking for a few days at that point and could not get to a standing position without having to pull up on something. So anyway, now his is walking like a mad man and can stand up wherever and whenever he wants. At times he even tries to run away from you, but he soon falls flat on his face.

I've been meaning to get some video of him walking now that he has met another milestone. So in the next few days I will try and get this done. I hope this weekend finds you all well. Love you all!

---Allison

Saturday, June 21, 2008

Saturday, June 21, 2008

This last week has been really busy. I've had appointments of various sorts everyday this week. We've been up to PCMC twice to check Ethan's labs, blood pressures, and adjust his medication doses. His cardiologist feels that the dose of enalapril he is on now is a good maintenance dose. However, he does want us to come back in a month for a clinic visit and to have a quick ultrasound to re-check his heart function. He had originally told us that we would do this in 6 months, so I am unsure as to why he changed his mind. I am hoping that it is only to see if the medication is helping and not because he is overly concerned. I am okay with it. I would rather have them check it more often than risk missing something. Ethan still continues to have problems with vomiting. In fact, it seems that I can't keep up on my regular laundry because the machines are always full of bed sheets, blankets, towels, or soiled clothing. But as long as they don't think it is happening because of his heart, we will just keep doing what we have been and hope that he grows out of it soon. Thanks to all of you who keep up on us (especially since I haven't been as good about writing as frequently). You really don't know what it means to feel like people care and support you. Thank you.

----Allison

Friday, June 13, 2008

Echo Results

So yesterday and today have been spent at PCMC for Ethan's end of study visit for the enalapril study he was in. Yesterday was the echo. The cardiologist does not think that the vomiting is related to his heart. However, the only thing he could say about his heart function is that it is "OK". I've pressed him a couple of times as to what that really means. He basically said that some doctors might say it didn't look very good and that others would agree with him that it is "OK". He said that it didn't look "bad" but he wished it looked better. I have to admit that I was a little bummed about the results. Ethan has been doing really well lately and so I guess I was hoping for at least a "good" echo. But I guess "OK" is better than "bad". He said that we will probably do another echo in about 6 months to see how he is doing.

Ethan also had his developmental testing today and we should be contacted either later today or early next week with those results. I don't think there should be any surprises with those results. I think he is fairly average in most things.

So now that Ethan is no longer in the study, the cardiologist wants to put him on enalapril for real (he may have already been on it but we won't know until the study is over in a couple of months). So we will start this in the morning and check his pressures at our pediatrician's office. Then we have to take him back to PCMC next week for anthother blood pressure check and possible dose adjustment and lab work.

So to summarize the last couple of days I would say that they have been "OK". Hopefully with these medication adjustments we can get some better news next time around.

---Allison

Wednesday, June 4, 2008

Wednesday, June 4, 2008

I don't know what my problem has been lately. I don't think I've ever gone this long without a blog update before. I guess no news is good news, right?

In my defense, we've been very busy. My sister, Angela got married last Wednesday. She of course looked beautiful and it was a fun night. Also, this last Saturday, we started putting in our yard. I had worked the night before and got to sleep around 6:30 that morning. I was able to sleep till about noon. However, I started feeling guilty and so I got up to help Tim, my dad, and my uncle Brent out in the yard. As soon as I got out there we began rolling out the grass. It lasted pretty much all day long. We did get some help from a few of my brothers and a couple of neighbors which definitely helped. I didn't realize how physically exhausting putting in a yard was. I honestly could hardly move that night, but, it was SO worth it. I can't wait until it's done and the kids and I can finally go out and play in our yard.

This week was supposed to be the developmental testing and sedated echo for Ethan. However, they called me Monday night and told me that it had to be changed until next Thursday and Friday. I was really hoping to get it done sooner, but I guess there is not much I can do about it.

Ethan is still vomiting. He does it at least once or twice a day. His energy level is still really good which keeps me from panicking too much. In fact, today I was making lunch for Gavin and Ethan was sitting on my be watching T.V.. I don't worry about him falling off because he is scared of the edge. However, when I went to go and check on him, he was no longer on the bed or even in the room for that matter. He had climbed off of my bed onto the bench at the foot of the bed and then onto the floor. He then crawled down the hall and climbed up 6 stairs into the bonus room where he was just playing with his toys like a big boy. As soon as he saw me, he started bouncing up and down with a great big smile. You could tell he was SO proud of himself. And although this means my luxury of keeping him in one spot is over, I am proud of him too.

---Allison

Monday, May 19, 2008

Monday, May 19, 2008

So I guess I didn't realize that a week had gone by since my last post. I guess I have been pretty busy.

This last week we took Ethan into the cardiologist to check out a few things that had been bothering me. His oxygen levels have been lower (76-79% at night) and his lips have been looking blue at random times during the day. Also, he is not gaining weight like he used to. However, the main thing that made me call for an appointment is that he had been vomiting anywhere from 10-60 minutes after he would eat. This had been going on for about 10 days and would happen up to 3-4 times a day. Now this is a totally new development and just seemed odd. The Dr. said that he wasn't too concerned by just the looks of Ethan, but that all of these things were worth looking in to. So anyway, they did a chest x-ray and a quick echo to check his heart size and function. Both tests looked OK. The good news is that his tricuspid valve is not leaking as much as before. However, the not so good news was that the Dr. was hoping his heart function would have improved since his last echo was done at 5 days post surgery (and will usually improve with healing), but looked about the same. So not good but not too bad. Also, his blood pressure is still high (systolic around 112-115's) and they would like it in the 90's. So, to make a long story short, they will move his sedated echo from mid July to the 1st week in June. They will be able to check out some more things in debth and will also follow up on his blood pressures. Since the appointment, he has pretty much stopped throwing up (except for when he gags himself) and I have really been trying to up his calorie intake during the day. At this point, I am not too concerned but I will be curious to see what his sedated echo reveals.

This weekend Tim has been out of town. He went to Denver for his cousin's wedding. I wish I could have gone with him but I had my sister's bridal shower on Saturday and needed to stay home. It was just a quick trip. He left on Friday and arrived home this morning. I was able to see him a little while before he went to work. By the sounds of it, he had a really great time. He truly loves visiting with his family. (He tends to get a little lonely since he is the only one in Utah.) He is such an amazing husband and I always miss him anytime he is away. I am glad he is home.

---Allison

Monday, May 12, 2008

Monday, May 12, 2008

So it has really been a busy week or so. We celebrated Ethan's birthday. I had a fun time watching my youngest brother's road trip through all 48 states (and all of the fun publicity in the news about it). We attended an open house for my oldest brother who is going to Saudi Arabia this week for 6 months. We celebrated mother's day (which was really a nice day). And tonight we are celebrating my nephew Austin's birthday (yesterday) and my birthday (tomorrow) tonight at my house. Also, this week I will be preparing to throw a bridal shower for my sister this weekend at my house.

So with all of this happening, there have been a few things that I need to update on. Last week I took Ethan and Gavin for their well being check ups. Ethan weighed 20 lbs 3 oz which puts him in the 10% for weight and was 29.5 inches long (40Th% for height). And Gavin was in the 75% for both height and weight. I was disappointed with Ethan's weight gain because he had dropped in percentiles so much from his last appointment. It turns out that at his last appointment they made a mistake and he was not in the 90% for weight but was really only in the 30Th%. So he did in fact drop, but not as much as it appeared. Ethan is scheduled for some developmental testing and another ECHO in July. I am anxious to see how the Md's feel he is doing. I am hoping I can get him circumcised then as well, but I still need to find out some more information about it.

On a sadder note, my sister Karalee's son Austin (the one who's 7Th birthday was yesterday) has just been diagnosed with Muscular Dystrophy (MD). This is of course is devastating news and she is having a difficult time. She has only 2 kids and has been trying to get pregnant for a while now. It seems so unfair that not only is she having a difficult time getting pregnant, but now she finds out she will watch her only son fight a losing battle. I know some of you know her (and even those of you who don't), but I know that when things have been difficult with Ethan, I have been comforted by the many prayers that have been offered in my behalf. At this time I ask that you will add her and her family to your prayers. They've traveled a rough road and it won't be getting any easier. They really could use all of the prayers that they can get.

Tuesday, May 6, 2008

The Great American Road Trip!

I don't know if any of you have heard about this on the news, but 1 of the 3 drivers is my brother Adam. Good luck guys!

---Allison

Thursday, May 1, 2008

What a Year!!!



Today is Ethan's 1st birthday!!

In anticipation of today, I've spent a lot of time reflecting on our experiences this last year. As many of you know, Ethan was not a "planned" pregnancy. However, we were very excited when we found out I was pregnant and we truly felt like he was a gift from God. Initially, I doubted my ability as a mother to raise 4 children but I felt that God would not send me another child if he didn't trust me enough to raise and care for him. It wasn't until Ethan was born that I realized how much responsibility my Heavenly Father has entrusted me with. I can't put into words how blessed our family has been to have Ethan in our home. When he was born, our family was complete.

I've created this montage in honor of Ethan who has worked so hard to make his mark in this world. As I have mentioned before, it is a little long (about 10 minutes). The first 2 songs in this montage are extra special to me because I used to play them in the hospital while I sat at his bedside and stroked his tiny head. (At the time I couldn't hold him and it was the only spot I could caress that didn't have protruding wires or tubes.)

I will never forget all of the prayers, love, and support that was given in our behalf during this last year. I want you all to know that we couldn't have done it without you. I pray that together, we will have many more years to celebrate.

I hope that you take the time to watch and honor this amazing milestone with us.

---Allison

Tuesday, April 29, 2008

Daily Grind

So now that the vacation is over, I've really been trying to get the house in order so that I can get some spring cleaning done. Spencer and Emily started back in school today which should help. As most mothers know, it's hard to get anything done when the messes keep following you.

I am hoping I can get it in pretty good shape by Thursday, so I can take that day off and enjoy it. Believe it or not Ethan will be turning 1 that day! We have been so blessed this year that it is hard to express in words. Because of this, I've made (another) montage. I know you are probably getting sick of them by now, but you can't do it for just 1 child without doing it for the others. This one however is different. It will tell the story of his first year and is longer than the other ones (about 10 minutes). We've had a big year and it was hard to compact it into just a few minutes. So with that being said, watch for it on Thursday.

We celebrated Tim's, Emily's, and Ethan's birthday's (along with a couple of others) on Sunday with my extended family. We had a BBQ and a nice evening of cake, presents, and visiting. I am sure we will do something special on Thursday to recognize Ethan and his journey. I am not sure at this point what we will do but we definitely need to celebrate. First birthday's are always fun and important, but due to the circumstances, this one just seems extra special. Anyway, enough stalling, I need to get back to getting the house clean. I hope today finds all of you well.

---Allison

Friday, April 25, 2008

Texas Pics

This is at the stockyards when they are taking the bulls out for a stroll. This is one of the things we liked to do when we lived in Texas. The bulls are fun to see but there are also some tourist shops that we were able to get some fun souvenirs in.

Spencer and Gavin are having a fun time "shooting" the bulls with their play guns that they bought at one of the tourist shops. Gavin was really getting into it.

We went to Matt's house (Tim's brother) for a day of visiting, water games, and of course a great BBQ. It was fun to sit outside in the warm sun and let the kids run around in the country. Gavin got bit by some fire ants but it didn't seem to slow him down for very long. Ethan loved sitting in this swing.

While in Texas we stayed at Tim's parent's house. I was on the computer when Gavin found these glasses on the desk. I am pretty sure they belong to Larry. I think Gavin thought he looked pretty cool.


The night before we left, we had a birthday party for Emily. Tim's family were very generous throughout our entire vacation as well as at Emily's party. She got some fun gifts. Again, it was nice to spend time with all of Tim's family.

There were so many other fun things that we did while we were in Texas that I didn't take my camera to. We spent a fun night at my friend Donna's house with her family and another friend of mine, Stephanie. I worked so much the year that we lived in Texas, the only friends that I made were people that I had worked with. I have to say, these 2 women are AMAZING nurses and I have the utmost respect and admiration for them. To this day, I try and remember their example to me as leaders. It was so nice to visit and reminisce. There are just some people you never forget.

I don't know why I didn't bring my camera here but we went to the Fort Worth zoo which was SO fun. Emily loves white tigers and was really excited to go see the one they had. Gavin had never been to a zoo before and I don't think he understood that there were REAL animals there. The look on his face when he saw the animals for the first time was priceless. It was a look of awe and excitement. It just so happened to be the monkey exhibit and they were entertaining to watch. Also at the zoo was a bird exhibit where the kids could feed the birds. The birds would fly all around them and then sit on the food sticks they were carrying to eat the birdseed stuck with peanut butter. All of the kids had fun doing this. Although, I have to admit it was fun watching Gavin chase the birds trying to get them to land on his food stick. He was laughing and laughing and obviously had a great time.

Tim and I, Spencer and Emily, and Ashley and Katie (cousins) went to Six Flags. Tim's sister Rachel was kind enough to watch Gavin and Ethan the entire day for us. Again, I wish I had taken my camera but I thought it would be a pain to carry around. Emily's first amusement ride EVER was the Titan. It was 25.5 stories high and went 85mph. She got off and was on an adrenaline high! She was jumping and throwing her arms in the air with shouts of approval and glee. She is such a dare devil. She was crying when there were a couple of rides she couldn't go on because she was too small. In fact, we left the park to go to lunch at Poncho's (an all you can eat Mexican restaurant). On the way back to Six Flags, Emily states she doesn't feel well. Can you see where this is going? We were looking for parking when she began hurling in her lap. She began crying, not because she didn't feel good but because she didn't want this to keep her from going back to the rides. Tim and Emily went home to get cleaned up and then met back up with us later that evening. Spencer on the other hand has announced that he is not a "thrill seeker" and so he preferred the smaller rides. I kept up with the kids pretty well, but I have to admit, toward the end, I began to get motion sickness on the bigger rides and would stay back with Spencer. All in all, it was and amazingly fun day.

We had a great time and the kids all want to go back soon. We have decided that we can commit to going at least every other year to visit. Gavin asked Tim just this morning if we could go back to Texas for "a sleepover". I wish it was closer. We can't wait to go back.

---Allison

Wednesday, April 23, 2008

Happy Birthday Emily!



Today is Emily's 7th birthday. It seems so crazy to me how much she has grown. She is an amazing girl. She has such a spunky and fun personality. She is not afraid of anything and knows what she wants. She is very sweet and tries to please us. She is great with Ethan and I know she will be a fantastic mommy one day. I am so blessed to have her as my only daughter. We love you Miss Em!

---Allison

Monday, April 21, 2008

A Little Fib

So I have to admit, I made a little fib. When I mentioned (a couple of posts ago) that Tim's airline arrangements had been messed up, it applied to our whole family. I didn't want to post that our whole family was going to be out of town for 9 days (and that there would be a nice empty house to target). So with that being said, we just flew back into Salt Lake this afternoon after spending some much needed time off in Texas.

First of all I have to say we all had a great time. We played at parks, went to the zoo and six flags, went to the Rangers game, visited the stockyards, had BBQ's, celebrated Emily's birthday (which is this Wednesday), and spent a lot of time just visiting with family and friends. The weather was great (with the exception of 1 night of severe storms and Tornado sirens wailing which just added to our adventure). The weather was in the 70's and 80's the whole time and we all got our share of the sunshine. We had a wonderful time.

I can't say that getting to Texas was as much fun. When we were leaving SLC, we had put the 2 older kids in charge of a couple of bags, only to find out while waiting in line to check in that the bags were left in the car. We called my mom to bring back the bags and Tim left the kids and I to go and meet her. I kept on going just to keep things moving along. It took a long time to get through security because they placed the kids and I in a glass box with a security guard while they went through all of our carry on bags. The kids and I finally made it to our boarding gate with literally 1 minute to spare. However, because we were the last ones there, we didn't have any seats on the plane because they had over booked the flight. I seriously about started to cry. Luckily, they were able to get enough people to volunteer to stay behind that we were FINALLY able to get on the plane. It was only after we had our tickets in hand that Tim was able to meet back up with us with the carry on baggage that had been left behind and missed all of the drama. Once we got on the plane, our flight was great. The kids did really well and Ethan slept most of the flight. It's nice to say that our flight home was smooth and there was not much drama.

I just wanted to say thank you to all of you who support us and keep up on our day to day happenings. I will post pictures when I am done unpacking.

---Allison

Friday, April 11, 2008

No More Meal Tickets

I've been weaning Ethan from breastfeeding for the last few weeks now. And I have to admit that I've been really looking forward to finally having my body back. I NEVER lose weight while I breastfeed and I try to not take any medications. This has been especially important with Ethan because I didn't want to have any medication interactions between the meds he is already on and any that may pass through my breast milk. Recently, He hasn't been happy about my decreased milk supply which is part of the reason why he has been so fussy at night. However, He was sick a week or so ago which was kind of the clincher as to the decline of my milk supply and the end of our breastfeeding days.

So, anyway, I just got Ethan down for a nap and I think this is the last time I will ever breastfeed him again. You might think this is great news but, surprisingly, I am sitting here in tears. I know, I know, you all think that I am crazy. I've always felt a little sentimental with my other kids when I was done nursing. But there has always been an equal amount of excitement to balance it out. However, with Ethan, you have to understand that not only do we plan on him being our last child (which it's always a little bit harder when you think it's your last), but, when he was born this was literally the ONLY thing that I could do for him. It was so hard when I couldn't hold my baby, I wasn't sure if he knew who I was, he didn't yet know my smell or voice, and I didn't feel I could comfort him in any way. I couldn't even do the small things for him like change his diaper.

I had been told by some of the doctors not to be surprised if my milk never came in due to the stress of our situation. I remember becoming very determined to do this ONE thing that nobody else could do for my baby. I religiously pumped every 3 hours and I would even set the alarm to pump in the middle of the night. I really worked hard to make it happen. It was only after much persistence that his doctors even let me try and breastfeed just a few days before he was discharged from the hospital. Usually heart babies can't breastfeed because they tire too quickly and don't get the nutrition they need. However, I think Ethan and I made a great team. He is (to date) the only HLHS baby to ever be discharged (post Norwood surgery)without a feeding tube.

I promise, I am not one of those le letche--shove it down your throat kind of women. I only breastfed my 1st 2 children for 4 months, and although I did breastfeed Gavin until a year old, it was mainly because HE liked it so much (and it did save us some money). Now, I obviously agree that breastfeeding is what is best for the baby but I completely think it is the mother's choice in what she feels is best for her and her baby. But with that being said, this was VERY important to me to give him the best nutrition possible under his circumstances and to help keep him from getting sick through the winter months and his 2nd surgery.

I am so grateful for the opportunity that I had to feel like I did something that mattered to him. I will miss feeling like he needs me.

---Allison

Thursday, April 10, 2008

Thursday, April 10th

So today started out with a bang. Last night we found out that Tim's flight on American Airlines was cancelled and we were up until 2am trying to figure out his options. (We finally were able to get a flight with Delta the next day.) When we were finally able to get to bed, Ethan woke up. He was very restless, he was crying, and of course he was tossing and turning in our bed for the next few hours trying to get comfortable. I finally took him into the living room around 5 am so Tim could sleep since he had to work in the morning. Ethan was up for about 45 minutes before he and I finally fell asleep on the couch. I then had to wake up 2 hours later to take Emily to the dentist to get a tooth pulled. Which, by the way, she did really well with.

Those who know me know I LOVE my sleep. How long do you think I can keep running on 3, maybe 4 hours of choppy sleep? Now don't misunderstand me, It's not that I can't do it (I've done it many times before) but who wants to? So, the day has just begun and I am already exhausted. I still have to get our laundry started, (which there is a mountain of), go to a 2 hour staff meeting, figure out a way to get Emily to her soccer game while I am gone, and do a service project for Scouts tonight. Also, Lost is on tonight, so I have to make sure there is time for that, Yeah! (I hope it's not another re-run). I am hoping that in between all of this I can maybe catch a nap. Do you think the laundry could wait until tomorrow? Anyway, it's not going to be a bad day (I promise I KNOW what a bad day really is), it will just be a busy day where I simply go through the motions and hope things run smoothly. Wish me luck!

---Allison

Sunday, April 6, 2008

Sunday, April 6th

I just wanted to let you know of a sweet little baby who has captured our interest and hearts. Her name is Gracie and she is just over 2 weeks old. She has HLHS just like Ethan but has ran into some major setbacks. She has an amazing family who have kept their faith and have had to make some difficult decisions. Gracie is currently defying all the odds. Although she is not out of the woods by any means, she is currently stable which is a miracle in and of itself. Gracie and her family could use as many prayers in their behalf as they can get. You can read their story through the link titled "Gracie" under our "heart friends".


---Allison

Friday, April 4, 2008

Old Look Again

OK, so as you can see I've reverted back to my original blog look. I still haven't found anyone who can show me how to change my background to a cute one and still keep the sidebar pictures and widgets. Oh well, I guess it really doesn't matter much anyway.

So as far as the home front goes, we are are still just trying to get over the colds that we've all had for the last week. Up until last night, Tim has been superman and hasn't been sick. But it seems that it may have caught up with him and he is now starting to feel a little yucky. I hope we can all get over this soon.

On a funner note, we finally finished our bonus room this week. We got carpet on Tuesday and the kids just love running around in a big open room. It has been really nice because they are off track and get bored easily. It's still too cold to go outside and play, so this is a welcomed new play area for them.

Well, this is my weekend to work, so my entire goal today is to try and get a nap in. It's been a bad week for sleep. With the exception of last night (I got to bed around 11pm), I haven't been asleep before 1am and once it was 2am and one night it was even 3am. The reasons for no sleep are all different but it has usually been because either I was sick or Ethan was sick. It's hard to sleep when you are stuffed up and can't breathe (or coughing, or a sore throat, you get the picture).

I hope that this weekend will be a fun one for you all. Take care.

---Allison

Tuesday, April 1, 2008

Happy Birthday Tim!

So today is Tim's big 35! (of course I have to point out that he is now halfway to 70, ........ yikes!)

For all of you who know Tim, I don't have to go into great detail about how amazing he is and how well he treats (and spoils) me. He has a sharp mind and a kind heart. He is thoughtful, hard working, funny, balanced, sensitive, patient, and grounded. He is truly one of a kind and I could never have dreamed of having a better husband to share my life with. Happy Birthday Sweetie!!

I love you!!

Friday, March 28, 2008

It's Going Around

So I guess this house is full of a bunch of sickies. Ethan started running a fever Wednesday night (101.1 axillary) which really concerned me. His oxygen levels were in his "normal" range but low for him (79-82%). His respiration's were high (60's - 70's) and his heart rate was also high (160's). He had a cough and a yucky nose and just wasn't feeling good. So, I called his pediatrician (at 10:30 p.m.) and she said just to let the dose of Tylenol that I had just given him have a chance to work. She said that if he continued to breath this way when the fever broke or if his fever wouldn't come down, that I should take him to PCMC's ER. Luckily, he responded well to the Tylenol and I just watched the clock faithfully until it was time for his next dose.

Even though he was looking and acting better the next morning, I still took him into the doctor's office just to make sure there wasn't something more going on. I was pretty sure it was just a virus because all of the other kids have had mild coughs, sore throats, and congestion, but none of them have had a fever. So, again, I just wanted to set my mind at ease that there wasn't ear infections or pneumonia or whatever else that could be going on. Well, to say the least, it was just a virus and he seems to be doing better today. He doesn't have a fever anymore and he is just mainly snotty and clingy.

Now, when Gavin woke up from his nap today, he said "I'm not feeling very good" and sure enough he has a fever. Also, Emily came home from school today and went to sleep. I wouldn't be surprised if she too woke up with a fever. I guess we'll see. Hopefully, we can just all get feeling better soon.

So, with all of that being said, our insurance denied Ethan's last RSV shot. They said it is no longer RSV season and they wouldn't pay for his last dose. We did have the "option" (ha, ha) of paying for it out of pocket with a price tag of $2800.00. This really frustrates me because RSV season is NOT over and Ethan has been sick recently with respiratory issues. Anyway, we appealed it and our Dr. spoke with them and they still denied us. I was REALLY wanting to get that last dose which would cover him while we traveled and until the RSV season was officially called by PCMC. It's kind of crazy that the insurance company can over rule our physician and the care she feels Ethan needs. What can I say? I guess I should be grateful that he got the doses that he did.

I hope that all of you out there are doing and feeling well.

---Allison

Wednesday, March 26, 2008

Gavin, Gavin, Gavin


What a beautiful sight. I sometimes don't know what to do with this precocious (yet very sweet) little child.

We have been finishing our bonus room above our garage and so there have been a few small tools left here and there around the house. I honestly put them "up" when I find them. The only problem is that Gavin is a monkey and will climb (literally) to the top of any shelf. He gets into the pantry, the closets, the cupboards above the washer and dryer, and he can also get anything on the top of the fridge. He also knows how to unlock any door (from the outside). This morning before Tim could even get to work, Tim had already caught him trying to cut the cords to Spencer's PlayStation system. And just yesterday (I think), I caught him putting my keys into the power socket (which by the way, I have protective covers in, he just takes them out).

Well today, I was walking down the hallway when I heard my bedroom door slam shut. Of course, when I tried to open the door, Gavin had already locked it. When I finally got it open, I asked him what he was doing. He proceeded to pull out a screwdriver from behind his back. I took it away and didn't think much of it as I didn't see any immediate damage.

A little while later I had gone outside to get the mail. Upon returning inside the house, I was looking down at the mail and saw some screws on the floor. After further inspection, it turns out he had been taking off the light switch covers in the living room and hallway. Honestly, I am not an absentee mother. I really don't know how or when he does these things.

Well, to say the least, he was put in time out and told to take a nap (see the beautiful picture above) which I think I needed more than he did.

---Allison

Saturday, March 22, 2008

Poor Baby


This weekend was my rotating work weekend. My shift went really well and I was excited to come home and get in bed. When I sat down to feed Ethan, I looked at his face and he looked like he had been beat up. I took him in the bathroom so I could see him in the light and he wouldn't open his eyes. They looked like they could be oozing but he also had a crusty nose that the drainage could have come from. Well, I knew that it was most likely an eye infection, but because of his last appointment and all of the small things that were just a little off, my mind began to race and I started to panic a little. They have always told us to watch for puffy eyes and signs of retaining fluid as this could mean he is going into congestive heart failure. Well, these were definitely puffy eyes. So, I called PCMC and talked with the cardiologist on call and they said just to see our normal pediatrician when their office opened and rule out conjunctivitis before we brought him into the ER.

I took him into the office as soon as it opened (I've had only 2 hours of sleep at this time since working my 12 hour graveyard shift). I am glad I didn't take him into PCMC because after he woke up and I could see his eyes, I was pretty sure that it was simply an eye infection. They were really red and they were definitely draining icky stuff.

After he was assessed by the doctor, she felt comfortable that it was just an infection as well. (He weighed 19lbs 10 oz on their scale). We were given a prescription for eye drops and sent on our way. I was supposed to go back into work tonight but they were nice enough to take me off of the schedule so I could get some sleep and take care of Ethan (and to also enjoy Easter).
He is so sad to look at. You can tell he just isn't feeling well. He is very fussy and just wants me (and only me) to hold him. I am so glad that I didn't have to work tonight. Tim would have really had a rough night. Let's pray these eye drops work soon!
---Allison

Thursday, March 20, 2008

Study Visit

Ethan, Gavin, and myself just got back from PCMC for one of Ethan's follow up visits for the study drug (enalapril) that he is on. It was an easy appointment (no lab draws or x-rays) which is why I even attempted to take Gavin along.

They took his blood pressure which was a little high for him (114/60). It could be high simply because he's outgrown his dose. The study nurse will call us tonight after shes given the cardiologist all of his new statistics and let us know if we need to increase any of his blood pressure medications. One other thing is that his sats were only 83% on room air. We don't have to have him on oxygen unless his percentages drop below 80% but when he is at home he usually sats between 87-89%. I haven't monitored him in a while since he has been doing so good. But, when he wakes up I am going to check his oxygen levels on our monitor and see if it makes a difference or not. Also, at this appointment he weighed 19lbs 5oz and was 28.5 inches long.

*Update- His oxygen levels were 88% on our monitor at home*

I take him in tomorrow to get his last synagis (RSV) shot. I am curious to see how much he weighs on their scale. When he got his last shot (4 weeks ago) he weighed 19lbs 3oz. I am hoping that he is gaining more that a couple of ounces in a month. If he really hasn't gained much weight, it could be because he is becoming more physically active. He has been crawling around now for a couple of weeks and easily pulls himself up on anything. So it may be that he is simply burning more calories. I hope that's the case anyway. I hate to think of the alternative which is that is heart is starting to lose function. There are also times in the last couple of weeks where he will breath heavier and faster. He is not in any distress, but he just seems to be winded at times. I mentioned it to the study nurse today and she said not to worry, that it was probably due to him exerting himself more. Regardless, it is something I will definitely keep an eye on.

As part of the drug study that he is in, there will be another sedated echo when he is 14months old as well as a full developmental testing. I will be anxious to see what the results are. I am hoping that his tricuspid valve is doing OK and that his heart function is still looking good. I guess until then, we will just watch and wait. I hate waiting. When anything is even a little off, my mind starts to wander and I just want to know that everything is OK. Overall, his appointment today was fine, it just bugs me that his pressures are up and that he is not gaining much weight (and that his sats are lower than usual but I will double check this before I get too concerned). Both of these things can be explained and fixed but I just want to make sure that nothing is missed and these aren't pieces of a bigger picture. I guess the moral of this story is that you can't get great news all of the time.

I don't want to sound paranoid. He really is doing great for what he has to deal with. I just want to make sure that nothing goes unchecked. Thanks for all of you out there. We appreciate all of the love and support.

---Allison

Monday, March 17, 2008

Rock Star Material?

We were getting ready to go to my parents house yesterday. Gavin had been told to "go get dressed". Well, he comes walking into the kitchen wearing NOTHING but a mismatched pair of my socks with his sandals. I couldn't stop laughing! I HAD to take a picture. I obviously wasn't going to take any compromising photos, so I had him hold the guitar so I could take his picture. Well, he then started "jamming" to no music which made me laugh even harder.


He wanted me to keep taking pictures, so I had him put on some of his underwear. He was really getting into his guitar groove. (Remember, there is NO music playing). He is SUCH a character. You make me laugh Gavin!

By the way, potty training is going great! He has turned a corner and now only wants to wear his big boy underwear and just last night he even told me that he "didn't want to go poo poo in his underwear" and then he walked himself to the bathroom.

---Allison

Monday, March 10, 2008

Happy Birthday Gavin!



Today Gavin turns 3! We had a party for both Gavin and Spencer last night. This is such a fun age for birthdays. Gavin was SO excited to open his presents. He woke up wanting to play with all of them this morning.

Gavin is a one of a kind kid (aren't they all). He is my most physically strong and athletic child. He is very smart, very sweet, very precocious, and VERY busy. When he gets into trouble he just looks at you with those big blue eyes and then flashes you one of his flirtatious little smiles. He knows how to charm you out of a punishment and becomes very offended if it doesn't work. He really looks up to Spencer and wants to do everything that his brother does. Gavin has a very special place in my heart as well as in our family.

Just like I did for Spencer, I created a short montage in honor of Gavin. You can watch this by clicking on the "play" button. The song in the montage was Gavin's "song" when he was just a baby.

Happy Birthday Gavin. We Love You!!

---Allison