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.