Christmas Morning

At the park

On Saturday we went to Disney World and watched the Christmas parade and attended the Candlelight Processional with Whoopi Goldberg. Here are some pictures!

Christmas Rambling

The speaker at church yesterday read the above scripture and then asked each of us to ponder the meaning of each of the titles of Christ and the significance each of these titles/roles has in our lives. I am humbled to know that I have a Savior who has done so much for me. He is Wonderful! Because of Him, I have peace. My words seem to trivialize the great role that He has played for all mankind, and that is weakness in me. I cannot write words well enough to express myself and the gratitude that I have for my Savior.
I am thankful to be celebrating His birth and hope that during the coming year I can continue to grow in my love and appreciation for what he has done. Through the trials and blessings that I have had, I have come to know that He loves me and is anxious to help me to develop into the person that He knows I can become. I have also learned, and continue to learn, that He is caring for me and my family.
He has cared for Samuel before I was blessed to be Samuel's mom. During those first months after having Samuel I begged for Samuel to be spared. I said in so many prayers, "Please heal him! I want him here with me!" Those prayers were answered, and Samuel continues to grow and be so strong. During my prayers, however, I also received the reminder and assurance that He wants us there with Him. He wants us to be close to Him; He wants us to be like Him. If we rely upon Him, He will counsel us so that we can more fully receive His peace.

Home Today

Well, yesterday Samuel did have some difficulty breathing after surgery. They gave him a breathing treatment before we left the hospital and then we gave him his treatment before he went to bed last night. Poor little guy - lately he has been holding the mask himself, but last night he wanted nothing to do with it and he screamed the entire time. The screaming got so bad that we had to stop and start again 3 different times.
Anyway, Samuel had a good night and then this morning he was not breathing well again so we gave him a treatment and decided that David would go to work while Samuel and I would spend the day at home resting.

No Driving or Operating Heavy Machinery

Samuel is home and all is well. The discharge instructions include that we shouldn't allow Samuel to drive or operate heavy machinery. So, I guess we will have to find other things to fill our time :)
Seriously though, Samuel did very well in surgery. He was taken in just before 7:30 AM and we were leaving the hospital just before 9 AM. He was a little loopy coming off of the anesthesia and just jabbered and giggled. This afternoon we just relaxed and let him have a quiet day. Best news is that likely there will not be any other surgery until possibly after Samuel is around 3 years old! A whole year without a surgery - Yahoo!!!

Happy Halloween!

Halloween this year was lots of fun! We went to two 'trunk or treat' parties and Samuel had a great time. He loved carrying his bag because he really likes putting things in bags...however, he didn't know what to think of other people putting things in his bag!

He also had fun at the 'fishing pond'.
On Halloween we went to the Sea World Spooktacular and Samuel got his piture taken with the "Pumpkin Fish". We went late in the day because we were having record breaking heat so the only show we watched was "Shamu Rocks". Samuel loved it. I enjoyed the show, but even more then then show, I enjoyed listing to Samuel cheer and get so excited with the different tricks that were done.

We also went to the pumpkin patch again this year. We went right before going to Sea World - Next year we will have to remember to go earlier because going on Halloween the patch was pretty much closing down. Still got cute pictuers though!

Adventures with Visitors

So here are the pictures that you have all been waiting for: (warning: There are lots of pictures, I had a hard time narrowing them down!)
As you know, we moved. Samuel LOVES his room, and it's not even completely organized yet. It was the first room that we got started on because we wanted to make sure and have it mostly put together when Samuel got home from "school".

We went to Sea World with Connie's family while they were here and Kaylynn got picked to meet Seamore! Kaylynn is so adorable.

Samuel really liked feeling the ice in the wild Arctic exhibit.

The next weekend we went to Magic Kingdom. Samuel's favorite "attraction" was climbing about on the fence while waiting at Splash Mountain.

He also enjoyed riding with Auntie Connie and Richard on Pirates.

And splashing in Toontown.

It was cold (which means it dropped below 70!) so Samuel bundled up in this Halloween tiger costume.

It was a long day for the little tiger and he fell asleep in his car seat immediately...

Then Connie and family came over for dinner which was so much fun! All of the kids got to eat on beach blankets in the living room. Samuel had already eaten because he eats better when there isn't other excitement. Well, he still wanted to be with the cousins while they were eating so he got his chair and sat right at the end of the line!






Then this weekend we went to Busch Gardens with Bob! Here is a tiger from Busch Gardens....he's almost as cute as my Samuel tiger!

Samuel loved the carousel.

and the sky ride

Well, that wraps out our adventures of the last month or so. After finishing with Busch Gardens we did head over and close out Magic Kingdom. I meant to get a picture with Samuel and Bob. Samuel really loved Bob - he especially loved that Bob sat in the back seat next to him in the car.

It was so great to have parts of our families come visit us!

Busy Month

It has been such a busy month with moving and such. Sorry about not updating the blog! My sister and her family are here for a few more days - we are going with them tonight to see a show and I am hoping to get more pictures. It has been great to see them! However, I just can't believe how big they all are (not my sister, but the kids)! This little kids that I would play with while we were down at BYU are now teenagers! That just doesn't seem right. Has it been that long?!! Time keeps going faster and faster. I guess I just need to do better at keeping up!

September 11th

In honor of tomorrow I wanted to share this on my blog. I love the message of hope. Enjoy!

I had a great birthday this year.

I got up at 7:30 AM and David and Samuel were just getting home from grocery shopping. It was so nice to sleep in!

David then made us a nice bacon and egg breakfast!

That evening we went to the Kissimmee Steakhouse for dinner. We had never been there before and I wanted to try some place new for my birthday. I thought that it looked like a good place to try because they had some excellent specials on their website. The meals were delicious
David and Samuel enjoyed watching the chef cook on the open charcoal grill. We really enjoyed our dinner...but one hint for those wanting to go to this restaurant, if you look at the website and see specials, in order to get those specials you have to ask for that menu, otherwise they will give you the regular menu and you will end up paying about 3 times the amount. Luckily, I just happened to ask about the specials so they gave us the special menu. Perhaps this is also done so that locals get a different price than tourists?



After dinner we went and strolled around Magic Kingdom. We watched the parade and the fireworks. Samuel didn't really like waiting for the parade. But he did seem to like the parade itself.



(Side note: this week at daycare one of Samuel's teachers noted that Samuel doesn't have a lot of patience.....so waiting for anything is not Samuel's favorite activity)




You can see Samuel's puffy, red eyes because he just got done really yelling at the fact that we were waiting for the parade and we wouldn't just let him wander off where ever he wanted to go. Samuel is quite independent and pretty much has no fear of just going where he wants to go.

I really enjoyed my birthday. It was nice and relaxing. I got to spend some time with my two favorite people (David and Samuel) and I appreciate all of the thoughtful birthday wishes!

Now for your enjoyment I thought I would also include a video of Samuel dancing in David's shoes! I think that this was also part of my birthday gift because Samuel' came out of our room in order to put on his little performance!

The Ostomy

In the other post I said that we donated the left over ostomy supplies that we had to the hospital. I don't know if I have really ever explained what we went through with the ostomy. Plus, if anyone is going through a similar experience and they happen to search on the Internet for information perhaps they will see this entry and know that others have been through it too.
It was such a struggle at first, and I think that is why it was hard for us to give away those supplies and really admit that the ostomy chapter had ended.
Samuel got his ostomy two days after he was born. The stoma for the ostomy was about 2 inches to the right of Samuel's belly button. (Well, it was on his left side, but if you were looking at him it would be to your right.) There are so many different options for ostomy supplies....you can have multiple pieces, you have to cut them to fit the stoma, there are several options for skin barriers, etc. The difficulty is that a baby's skin is so delicate so the adhesive needs to be gentle, but strong. Plus, a baby can't tell you if it isn't stuck on right.
When we were trying to find the system that would work best for Samuel we were going through several bags a day. Each bag should stay on for about 3 days. Some insurance companies figure that if a bag is suppose to last 3 days that the patient can only have 11 bags in one month. Well, when you are trying to identify a good system you could go through 11 bags in one day! The price of the bags vary greatly, starting out around $10 each and then you have the cost of the skin barriers. It can get very expensive quickly. Plus, when you are prepping the bag is it so easy to ruin it. You have to cut the stoma hole without cutting the bag which sounds so much easier than it actually is. We were so fortunate that we had a friend that had gone through this with her baby and she had extra supplies, plus we had great insurance that would let us order whatever was needed. Also, one of the ostomy supply companies had a rep contact us. The rep sent us some samples of different supplies to try.
Also, each time the bag comes off it makes the skin get more raw....I mean, just imagine putting a strong bandage on your belly riping it off, cleaning the area, putting on a new bandage, ripping it off, cleaning, and repeating it several times. Now imagine that on a little baby's skin. Plus the stoma is where it is so the ostomy barrier/bag will have to go in the same place each time with very little variation. This is what was happening when we finally got to bring Samuel home from the NICU. We were up at least every hour with him changing his ostomy bag. David took it on as a personal challenge and after a couple of weeks we had a system that worked great on Samuel, but getting to that point was hard.
Some people think it sounds like it would be worth it to not have to change any diapers so I should clarify. Samuel still had to wear a diaper because only the poop would go into the ostomy, the pee still went in to the diaper. Plus, to empty the ostomy bag we would squeeze the poop out of the little opening (picture a large ketchup packet that is stuck to Samuel's belly) into a diaper and then you would have to stick your wipe into the bag to get out the left overs, of course along with the wipe you would have to stick you finger....sometimes that was pretty nasty.
Right as we were discharged from the NICU we discovered that there were 2 other babies that were struggling with keeping their ostomy bags on. It is so common to struggle at the beginning because every baby is different and they are growing so quickly. We remember feeling alone and nervous that it we wouldn't ever find anything that would work. But we did, it got better. We found different clothes that would help to keep the ostomy bag in place as opposed to knock it off. I think it would have been nice to have a little support group of parents that were going through or had been through similar struggles. David and I would be happy to help any other family going through this, but it really isn't that common. So by donating those supplies we hope that other families are helped.

Great Week!

This last week was so good. We finally had the long-awaited appointment with the geneticist, the results were in, and everything is fine! We thought that was going to be the result and it was nice to hear the news.
So, this doctor did her last exam with Samuel. She was so impressed with how well he is doing. Because the results came back with great news though, she doesn't need to follow up with Samuel any more. So, 17-months ago when Samuel was born we had a cardiologist, hematologist, gastroenterologist, and a geneticist all of whom have cleared Samuel. We have a healthy little guy who doesn't need all these specialists any more. Woohoo!!!
The day of this appointment we also stopped by the hospital to donate some of the extra ostomy supplies that we had and of course no longer need. We have been holding on to them because, well, there were always the what ifs. We let those go and now those supplies can be used by families who need them. We gave them to Sally, a nurse who cared for Samuel the whole time at the NICU and would also pop in to visit us when we had the other hospital stays. She couldn't get over how big Samuel is getting.....he is 6 times the size that he was when they first met after all! Samuel is now 24 lbs and 28 inches!
This week we also had appointments with Samuel's speech and physical therapists. This was Samuel's best speech appointment yet....he actually made noise! Usually in his speech appointments he is so quiet. This week he tried to say words and jabbered.
Physical therapy went really well. Samuel is on target in physical therapy. Actually, he is now advanced in his skills! He is on a 20-24 month level on many of the things that he can do. So, we no longer need to go to physical therapy. Hooray Samuel!

Another Hair Cut

Samuel got his hair cut last weekend and I meant to post pictures earlier, but I just didn't get around to it. He did have as good of an experience this time. I think that Disney just must do a better job, and surprisingly it was cheaper to have it cut at Magic Kingdom where he also got mouse ears then it was to get his second hair cut.

Samuel had kind of a rough week this last week. On Wednesday he came down with a fever and wasn't acting like himself at all. He would sleep most of the time and when he woke up he would just lay in his bed not wanting to get out or if he got up he would lay on the floor and just look at his toys. It was sad to see him so sad. Luckily he is feeling better now. Plus, he got some time to just be home with Mom on Wednesday afternoon and all day Thursday, and then on Friday he was home all day with Dad.

Such a Good Boy

Samuel really is such a good little boy. Being his mom is quite easy because he is so agreeable.
Sadly Samuel got a sinus infection and therefore he has been on antibiotics again. Antibiotics give his already sensitive bottom terrible diaper rash....really it is awful. I have never seen anything so terrible in my life and it happens so quickly. Anyway, because of this terrible rash, this evening after Samuel's nap, but before dinner, Samuel got to have some diaper-free time. He loves to watch his Baby Einstein movies. He just sits and watches and gets so excited. It was so cute to see him sitting there so I took a picture!

Samuel had speech again today. He still isn't saying any words. He understands them though which is great. I am trying not to worry. We are working with him and he is very smart, so in his own time I am sure he will say some words. Maybe he is waiting to say words until he can speak in complete sentences :)

Also, we got the lab tests drawn a few weeks ago for Samuel's testing. I am hoping that the Geneticist will call us soon to let us know the results. Why is it that the waiting is always the hardest part? I wish that they could just take the blood without any of us knowing and then when we go in to the appointment be able to tell us the results. Having to wait for the insurance to approve the testing (that took about 2 1/2 months) and then having to wait for the results (already 3 weeks) is really terrible - especially seeing as I don't really like using what patience I have.

Look Who's Walking!

Safety First

On Friday we met David's cousin and her family at EPCOT. Before they arrived we decided to ride the monorail. Samuel saw David holding on to the pole so he made sure to do exactly what Daddy does. Our little Mr. Safety. Holding on for dear life.
Samuel is getting so big. He has 8 teeth now and is well on his way to walking. Crawling is still the preferred mode if he needs to get some where quick, but he is walking pretty well. He still goes to physical therapy every other week, but that will likely be cut down to once a month at this next appointment because he is doing all of the things that a boy his age (both adjusted and actual) should be doing.
He goes to speech every week. He really has started making so many different sounds and he is doing so well and eating or playing with all sorts of foods. Unfortunately, he just doesn't want to make any sound what so ever when we are at speech. He is so quiet there and then the minute we leave the room he is back to being a jabber box. He doesn't say words yet, but he is now understanding that words refer to things (i.e. he knows binky, blankie, nose, eye, George, Mom, Dad, shoes, socks, feet, etc) which is wonderful to see him now associating words to things and responding to his name!
Samuel is doing really well. He is sick right now with a bit of a cold so we kept him home from church and have been doing breathing treatments. Hopefully he will be feeling better soon. Poor little guy - the only thing worse than being sick myself is seeing him not feel well!

4th Anniversary Celebration

On Saturday we went on a lunch cruise on the Gulf. It was a beautiful day and we had a really great time.
Here is a picture of Samuel and I before we got on the boatAnd here we have David and Samuel exploring the second deck of the boat

Just Some Stuff

I really don't think there is anything that Samuel does that I don't think is cute. That is likely not a good thing, and yes, Samuel is probably a bit spoiled. He is just such a good little guy that even if he does something that he isn't suppose to do (i.e. play with my dry sink) I can't help but laugh at his mischievous grin.
Here is Samuel sleeping. For those of you who haven't met Samuel, let me assure you that he does have two legs...He just likes weird sleep positions. While we were in Washington, Papa bought Samuel a little cheeseburger. I didn't think Samuel would even try it, but he did! He thought it was great. So, I got him another one. He thinks he is pretty neat sitting a the table eating his cheeseburger. He just nibbles at it and doesn't eat the whole thing of course. Actually, most of the time that he is "eating" is really just him taking it apart bit by bit!

Samuel likes to share - here he is offering me a bite!

Last week David had his birthday. We got a carrot cake and sang to him - Samuel thought it was quite the show....just look at his excited face!!! (He really did like it - and he LOVED the carrot cake, I just must have snapped the picture at a funny moment.)This week Samuel was moved up at school to the next class. He is now in the toddler room. He is doing well learning the schedule of the new room. He loves the other kids in the class - he plays really hard and when he comes home, he is absolutely exhausted.

He is up to 4 teeth now and I think he is working on getting some more. He is still our happy little guy and so much fun to have around.

Also this week Samuel was awarded a scholarship at school! Woohoo!!!

Tomorrow David and I celebrate our 4th anniversary. A year ago today I was in the hospital not doing well at all. This past year has had its challenges and while it was hard, each day I became more and more grateful for my wonderful husband. He has been such a comfort and a strength. What a lucky girl I am! Through all of the challenges we have become stronger together! In summary - I love my David!

Back Home

Usually when a vacation ends I am excited to be home. This time is a bit different. We didn't go to Washington for a vacation, we went because David's grandpa passed away. Grandpa was a really great man. Someone that you admire because of the way he lived. He was a good person, and he was that way because that was just who he was. His acts of service and kindness were quiet and perhaps unnoticed by all except for the individual or group that was served. He had a talent for setting people at ease and really made everyone feel welcome and happy.
He also is one of those men that really loves his wife. Grandpa and Grandma have a great story. Honestly, I think that one of the reasons I am such a lucky wife is because of the example of Grandpa.
Anyway, this time it was nice to come home to have all of the stuff that I am used to having around me and to sleep on my own bed with my own pillows. However, while that stuff is nice, I feel kind of homesick. I miss the family. Samuel LOVED playing with his cousins. The weather was beautiful and it was just so nice to be around family.
Here is he whole family - all together for the first time in over a year! At the graveside. Grandma really is a classy lady. She is full of grace - I really admire her.

All of Grandpa's children spoke at his funeral. They all did a wonderful job. Wonderful stories were told of Grandpa and everyone in the room was touched. I say everyone because towards the end Samuel got very wiggly and I took him to the back so we would walk about without disturbing everyone. While we were back there Dad was speaking. The funeral director who stood at the back as an usher took one of the programs and just stared at the picture of Grandpa and Grandma - he had tears in his eyes. By the words that were shared this man who didn't know Grandpa could tell that Grandpa truly was a great man!

Because of Grandpa's military service in the Navy for World War II and in the Army for the Korean and Vietnam wars he was buried with military honors.

The bugler who played Taps

Samuel relaxing in the hotel room. For his first trip he did VERY well. He is such a little trooper.

On Saturday we went to Tolmie Park on Puget Sound. That was really fun! It was so beautiful. The beach was completely different from Florida beaches, I loved it. We found sand dollars, crabs, clams, oysters, and a starfish!

Four generation picture taken on the patio at Grandma's house. Grandma's house and yard is absolutely beautiful. On a clear day (okay so this is Washington and those don't happen too frequently) you can see Mt Ranier from the patio. The home is very beautiful and it was built by Grandpa.

Easter, and the week after....

Sorry this is a bit late. We had a crazy week last week with Samuel getting sick and then David got what Samuel had - poor guys! But they are both feeling better now so hopefully this week will be much nicer.

Anyway, Easter was great! On Saturday we went to the Kissimmee City Easter Egg Hunt and had quite a bit of fun

After church on Easter, Samuel made signed some thank you notes with his hand prints. That was some very messy business, but he really had fun. Plus, he got to take a bath afterwords which he always loves!

Now for some exciting announcements! Samuel had a very exciting week. While he stayed home with me on Tuesday and Wednesday, he decided he would grab on to his little car and walk across the living room! What a champ. Then on Wednesday evening Samuel started to crawl. The excitement then continued today....on Wednesday I had made some Mac & Cheese and gave some to Samuel hoping that he would at least play with it. He touched it and was absolutely disgusted by the feel of it. However, today I made some more Mac&Cheese, and while David and I were eating our lunch Samuel reached out and grabbed some Mac & Cheese - and then he put it in his mouth!!!!

As you can tell in that last picture, he is pretty darn proud of himself. David and I are quite proud too. He is coming along so well. He is suppose to be getting some physical therapy and some speech therapy to help with the gross motor skills along with the eating and word recognition. That hasn't even started yet, but he is still progressing so quickly. What a smart little guy!