So almost 2 weeks flew by and I did not blog once. It was rather a busy time and on a personal level, a time of introspection. More on that in another post. As for Sam, he has been charging forward on so many new skills... so much progress that I am almost scared to have the bottom fall out. He had only just learned to get his body lifted up on all fours when he discovered he could put one leg out and push over his body into a sit. He has only done it 3 times over the last 2 weeks but I think he will get it down! He is able to scoot his body completely across the room now. I would not call it crawling but it is certainly a form of mobility. I just want to believe that he is going to get stronger and stronger..put behind us all the bad stuff and only get better.
Sam is finally clapping..it is the funniest thing to watch.. so much effort to share his exuberance! Funnier still is this tiny sweet laughter that only comes with absolute, extreme levels of silliness. You can tickle and tickle and he looks like he is laughing but with no sound but you have to be in complete silly mode to get the sweetest sounding laughter to escape.
Monday before last brought a new experience when I heard the nurse getting Sam ready for his bath and she called me to the room. Sam had blood dripping down his belly from the G tube stoma site. It seemed to stop but we did not know where it was coming from or why.. so we packed him up and called for an appt with his pediatrician. Luckily they had one opening at 4, within the hour. What I did not realize was I was making an appt to sit in the waiting room for another 2 hours, finally to be seen at 6! I guess I was just thankful for the last minute appt though. At our appointment, we found out Sam has again gained quite a good amount of weight and had reached 19 lbs 13 oz. As for the stoma, it seems the acids of his stomach had broken down the skin, causing a cellulitus and this allowed an area inside the tunnel area to become ulcerated, opening and bleeding. So he is on antibiotics once again and we are now treating the site during our regular cleanings with a mixture of a special creme with a mylanta antacid to help neutralize and create a barrier to the stomach acid.
The girls had swim lessons in our pool with their friends from down the street last week. The swim teacher is a good friend of mine who does such a great job with the kids. They learned many new strokes that we will continue working on all summer. Even though I was the one trying to convince Jason that buying a house with a pool could be an added hassle and expense, I have really grown to love having it during these hot, hot summers. Sam really loves it as well. His therapist this week started some hydro physical therapy in the pool and it seems easier, less taxing for him.
Friday, we made the trek to Sam's cardiologist in Pensacola. I was excited to find out at our Thursday playdate, that Sofie's best bud Gabby had her scheduled appt 1 hour before Sam's, so we got to carpool together and chat along the drive. Sam had a great appointment. His echo was great for function and although his EKGs have some tiny issues at times, he did not point anything out this time of concern. He still thinks our Bradycardias are electrical in nature but always needs to watch the function or (plumbing per se) of the heart as well. I hope our muscle problems never actually involve the heart muscle. Right now we feel his events are originating from neurological/ nervous system influences on heart rate.
The best part of this appointment was the reaction of the cardio nurse, Mary, stunned by his progress since the last appointment in February. She was amazed. She kept telling our home health nurse how this was a different child. "Did you see him before?" She asked and of course our nurse had not. She said how from our last appointments she had always been left feeling like prognosis did not look good for his moving around etc as he would just lay there and was so much more floppy. Not anymore. She watched as he practically crawled around up on the examination table, all the while grinning and laughing at her. His Dr. said Sam was his happiest baby all day and he also seemed quite impressed. It makes my heart swell with joy. I know it is easier for others to see the progress when they see him in spurts. Their reactions help me to stay hopeful and optimistic. It seems impossible to associate the words degenerative with how he has been doing in the last 3 months. I am still having a hard time with understanding his whole picture or a prognosis. For now, we enjoy him and challenge him to grow stronger. He was 19lbs 14 oz at this visit so.. another oz. He is only 27 inches so..yes, vertically challenged..even more than his folks. Here are a few growth charts for you sciencey people. The charts don't show his major drops in weight after birth during week 2 all the way down to 5 lbs. It took him over a month to get back to birthweight. But the real concerning period was from 6 months of age to 1 year when he did not grow one bit and actually (not shown here) lost weight on several occasions. SO to see him moving back towards a growth curve, albeit very low on the charts, is tremendous progress!
The day trip was also nice because we were able to stop by and see a good friend who was over there right now staying at Ronald McDonald House (our old haunt) while their new baby was in the NICU, born at 33 weeks. Their daughter is in our prayers and it sounds like she is doing well, training on her feedings and actually went home today. She is a first baby for this couple and I know this has been quite an unexpected experience. She just needed some time to put on a little more weight. Another good childhood friend also recently delivered her first babies..twins. I think one of the babies did require some help in the NICU, but they both seem to be doing well now at home. After going through the experience of not having a delivery go as planned, it somehow makes you feel more connected to other families experiencing it. One saving grace for these babies, however, is they hopefully will return to normalcy at home with no ongoing major health concerns. I am sending up prayers for all babies to be born healthy!
Last weekend was especially busy for us as Jason's dad took Jason and the girls out on his new boat Saturday and then since this was such a hit, we decided to do it again on Sunday. Sunday, Sam and I went along as well and I was pretty nervous about how it would all go for Sammy. I was pleasantly suprised to find that he thoroughly enjoyed himself. He did not get overly hot as there was a constant breeze and the cool dips in the water helped as well. We did wait till later in the day to go and we only stayed out for a few hours but it was a fun new experience for him and I was glad we went. He was tanked when we got back, sleeping like 15 hours straight but it was ok since we had no other plans. Experiences like these make it clear why we enjoy living on the coast.
In closing my super long blog post, I should share that our 10 year anniversary rolled around yesterday and although we did not go anywhere special or do anything big to celebrate, it was a nice day.
Jason gave me beautiful roses. We had dinner on the patio, while our girls swam in the pool. We reflected on our blessings. We laughed about how on our honeymoon we planned that our 10 year anniversary would be spent back in Jamaica with friends, celebrating in style. Ha! Somehow the 3 kids and nurses and equipment and work and house and all the other stuff escaped our fantasy. That's okay. I am thankful for the real stuff anyway. It may be crazy at times, but our life is pretty special.