Mason turned 6 months old on Monday! He is getting so big. I had to go through all his clothes and get rid of some his 3 month old stuff. Mason is 15lbs now. He is really great at grabbing things and putting them to his mouth. A couple weeks ago we started him on rice cereal, about a tablespoon a day, mixed with breast milk. He will open his mouth for the spoon and manages to get some in his mouth. Sometimes I wonder how much he's actually getting! He tolerates it just fine. In fact, I think he gets a little impatient with me because I go slow. He sure has an appetite! Mason sure is a mama's boy. I have a hard time being able to put him down because he just wanted to be held all the time. I'll lay him down on a blanket on the floor to let him play with his toys and it's a 50/50 chance he'll be okay with it. Sometimes he'll cry because he didn't want to be put down or sometimes he's okay with it, at least for a few minutes. He cries when I leave the room for even a minute a lot of the time. On Sundays Malone takes him for a couple hours so I can play piano in Primary. As far as I know he seems to do alright without me. Mason sure loves to giggle! Malone and I have got him to laugh really hard a lot lately. It's so fun! Mason is getting really good at sitting up. I think it's only a matter of time till he is able to sit up on his own. He sits up with assistance at his hips right now. I love watching him. He really concentrates on things. You can tell the wheels are really turning. Mason has started to babble a little bit. It is so cute! He'll say things like "gee" and likes to make raspberries with his mouth. I love it when he talks, it cracks me up. He loves to be involved in things. He doesn't like to be left behind, he wants to be with you and doing whatever you are doing. He likes to be actively doing something all the time. I can hardly get him down for a nap sometimes! Mason wakes up about twice a night on average. He seems to like Altivo and will watch him when he walks around. Tivo is protective of Mason, it's funny. We've had people over and Tivo is right up there watching people very closely when they hold Mason. Mason's occupational therapy is still going well. It's mostly just playtime, getting in some stimulation. The therapist will have him practice sitting up, laying on his tummy for tummy time, stimulate with a vibrator and brushes, and have him play with her special toys. It's not much right now. I think he'll need more therapy when he's learning to walk and such.
This week was a really stressful and crazy week. Monday, April 14th, Mason had an appointment to visit Scottish Rite Hospital in Dallas to see a developmental pediatrician. We haven't been to Dallas before so this was a first. We met the nurse practitioner, who will be our go to lady, who was really upbeat and nice. She asked alot of questions about Mason. We had to do a lot of catching up with these doctors so they knew Mason's history and what his milestones have been like. The doctor answered a few questions I had in mind. So here's what we learned. Mason's hips are in socket like they should be. Sometimes with weak muscles the hips can dislocate, but this isn't the case with Mason. Mason has little to no feeling on the bottoms of his feet and obvious weakness in his ankles. The doctor was confident that Mason would be able to walk someday possibly with the help of ankle supports. He tested to see if Mason has any muscle tone in his bum to see if he can control his bowels at all. We learned that he has a tight sphincter and might have a chance at being able to control his bowels. We already learned previously that Mason might have control over his bladder to a degree as well because the urine doesn't just pour out of him. He can let it out, if that makes sense. And of course we'll know more when we get to those milestones of potty training. The biggest thing we learned was from a CT scan we did on Mason's brain that day. The CT scan showed that the ventricles that produce cerebral spinal fluid have gotten bigger since his surgery in November. This means that the fluid isn't draining quickly enough and it's building up causing his head to get bigger. Malone and I had noticed his head has gotten bigger over the last few weeks. He's in like the 99th percentile (way off the chart!) right now in head circumference. And recently I started to notice his soft spot over his scar from his ETV surgery seemed to be a little firmer. So in a way this news wasn't a huge surprise to me. The doctor told us we needed to get Mason scheduled for an MRI and most likely get a shunt placed. He said he'd review the scans with the neurosurgeon and let us know.
The next day I got a phone call letting us know we needed to show up for the MRI first thing the next morning at Scottish Rite. I started to make plans for this, and then a few hours later I got a call from Mason's Dr at Scottish Rite. He said that instead of doing the MRI first thing in the morning at Scottish Rite, we'd have to go to Children's Medical Center a few miles from there and have him do the MRI there. Mason had to be sedated for the MRI, so the dr. and the neurosurgeon decided that instead of putting him under sedation twice (once for the MRI and one for the shunt surgery) that we should just do the MRI and then do the shunt surgery right after so we'd only have to put him under once. This news came as a huge blow because we just weren't expecting to have to do surgery that fast! I had to quickly find someone to watch our dog for us, let Malone know he needed to take off work for a couple days, and I had to finish up a few things around the house. I wasn't happy about being rushed into it because I was hoping to get a second opinion.
Mason's dr. told us to check in through the ER that evening so they can do his labs and everything before his surgery the next day. He said that they'd be "expecting us". The ER was a nightmare! Malone had gotten off work a little late, and we had a friend come over and help Malone give Mason a blessing. By the time we got to the ER at Children's it was 9:15pm. We got all checked in but had to wait in the waiting room with like 50 other parents with their kids. We waited and waited and waited. We waited probably 45 minutes before they called us back to get Mason's weight and information. Then they sent us back out to the waiting room to wait for bed for Mason in the ER. So we waited another half hour probably. Meanwhile Mason was getting hungry. I hadn't planned on having to wait since the dr. told us they'd be expecting us. I thought we'd just walk in and go straight up to neuro. So Mason was fussy and very unhappy. Finally they took us back to a room in the ER so the ER people could check him out, which was all routine. We kept telling the people that neuro was expecting us and that hey had told us to check in through the ER. No one seemed to know what we were talking about, and it was extremely frustrating. Finally a neuro P.A. came and talked to us who seemed to know what was going on a little bit. Apparently when Scottish Rite referred us over to Childrens they didn't tell them to have a bed ready for us. So we ended up waiting in the ER for another 2 hours until they could get us a room. Mason was starving!!! So I finally said I had to take a time out and feed this kid before we do anything else. They wanted Mason to start fasting at midnight. So I fed Mason at 11:30 up to midnight. After that they poked Mason a few times and got an IV going for him. Poor baby was so so unhappy. Both Malone and I were extremely unhappy about ready to snap at this point. We were exhausted, Mason was exhausted, and we had to just keep waiting and answering the same stupid questions over and over to every person that walked in our room. It was ridiculous!!! Finally at about 2:15 we went up to Mason's room. We were able to give Mason some pedialyte before he literally passed out for the night. Malone and I slept there in his room that night.
We only got a couple hours of sleep before the P.A. came in around 6:45 to talk to us briefly about the surgery/MRI. I was barely able to understand what the man was saying I was so tired. We eventually were able to meet Mason's Neurosurgen, Dr. Swift. This was the first time we had met him, and it was the day of my baby's surgery. Again, I felt so rushed through everything at this point. He briefed us in detail about the surgery and what to expect and why we had to do the shunt. I really wished we could have spoken with our doctor back home before we had to do this surgery. I wish I had stopped everyone and said this before we had gotten this far. Mason was scheduled for an MRI at 8:50am. He was starving since he had been fasting all night long. So Malone and I were trying to comfort him. It was about 5 minutes till his MRI when the nurse came in and told us Mason got bumped to 10:20am due to an emergency case. I burst into tears. I was holding a screaming baby who was starving and they told me he had to wait another hour and half?! I just cried as I held Mason. He didn't understand why I couldn't feed him. All he knew was that I wasn't feeding him. I felt like I was torturing the kid. The nurse assured us she'd do everything she could to make sure Mason was next. Luckily Mason fell asleep during our wait and stayed asleep until they took him away. It was so hard to hand my baby off to someone not knowing if he'd be okay when I saw him again. Malone and I were so heartbroken he even had to go through with this in the first place. We gave him a kiss goodbye and we left to go find some lunch and wait in the waiting room. We waited for about 4 1/2 hours. Finally Mason's neurosurgeon came and talked to us. He said everything went great, very straightforward. We were able to go and see Mason in recovery. He was sleepy, of course, and extremely out of it. He wasn't crying or anything, he just sat there all wrapped up in blankets. We had to wait there for about 20 minutes or so before they could wheel him back to his room upstairs. Mason slept for a long time that afternoon. I knew he'd be sleepy but it still made me worry. I just wanted to see my baby awake and himself again. Malone and I were able to get a little shut eye while he slept.
That night some friends of ours came and visited us there in Mason's room. They were nice enough to bring us food, which was soooo good. We had hardly eaten anything all day long. It was nice to have friends support us since we just don't have a lot of people here yet. After they left we got comfortable and tried to get some sleep. I woke up around 2 to try and see if I could nurse Mason. The nurse had to come unhook Mason from everything so I could hold him. I was so happy to find that Mason had an appetite and he was able to nurse without any problems.
The next morning the neuro resident came and talked to us and checked out Mason. He was doing really well and was eating well. She informed us that she would get started on Mason's discharge papers so we could be discharged that afternoon. What wonderful news!! Malone and I were so ready to go home with our baby. That day we were able to sleep off and on and managed to get little something to eat. There was one point that afternoon where the nurses were trying to cath Mason. His bladder scans were showing that his bladder was getting really full and he wasn't relieving as much as they wanted. So they tried to cath him but they couldn't get the catheter to go in. All 4 of us each tried with no luck. So the nurses left and came back a couple hours later and tried again, and it was still difficult. Finally the charge nurse got it! Later when we were finally told discharge care, the nurse told us we have to cath mason 2-3 times a day to make sure he is emptying all the way. I was so frustrated because I knew this was unusual for him to not empty. I am convinced the anesthesia or something had messed him up. But I am hoping once he is back to a regular routine and gets that anesthesia out of his system he'll be back to normal. In the meantime we'll be cathing a lot.
Our first night home our friends brought us dinner again, which was so yummy! I got up with Mason in the middle of the night to feed him and cath him. I struggled trying to get the catheter to go in, just like at the hospital. Malone even tried and he couldn't get it either. So we waited a couple hours and tried again. Still no luck. I just kept praying that we'd get it because I was so worried something bad would happen to Mason if we didn't get it. Finally around 8 that morning I finally got it! Thank goodness! This whole ordeal had been so scary. Malone and I were just exhausted from lack of sleep and stress. Malone however went to work anyway and I stayed home to look after Mason.
Over the weekend members of the ward have called and even brought a couple meals over. It was nice to feel like people cared about us and were willing to look out for us, even though many don't really know us that well yet. Today, Monday, Mason seems back to normal. He's got a half moon shaped incision on the left side of his head with a little bump and what looks like tubing that has been threaded along under his scalp, behind his ear and down into his abdomen. I have no idea what to do with his hair, it's a mess. But he is doing really well. He is back to normal, laughing and smiling. We have given him some Tylenol from time to time when it seems like he is a little fussy, but otherwise doesn't seem to be in much pain at all. In fact he acts like nothing even happened.
I am grateful for those who have prayed on our family's behalf and for his guardian angels who have watched over him. I am thankful to have the priesthood in my home so that Mason could get a blessing before his surgery. I am also thankful for those friends and ward members who have helped us out the last few days who have been concerned for our family. Mason is such an amazing little boy and Malone and I are so grateful for him everyday. He really brings sunshine into our home and into our lives. I don't know what I would do without him! I am also grateful for such an amazing husband who is so supportive of me and Mason and works so hard so that I can be home with him. Malone is everything to me. I love him so much. And I love my little boy Mason so much. I thank my Heavenly Father everyday for blessing me with such an amazing little family.
Mason is an expert at sitting up now and will sit for a long time by himself. I can put him in the cart at the store and he'll sit up there the whole time like a big boy! He jabbers all the time in his own language, often saying "da da" along with many other sounds. He doesn't bear much weight on his legs so he can't pull himself up to stand yet. And he isn't up to crawling yet. He just rolls. I think he rolls because it's easier for him. In therapy we have been working with him to get him ready to crawl. We'll put him in the crawling position and let him strengthen his arms We also give him exercises to help strengthen his legs so he can bear more weight eventually. We are expecting to start Mason on physical therapy in addition to occupational (not sure why we'd need both right now, we are still working it out!). I think physical therapy will be more helpful in getting Mason to bear weight. Mason eats everything we put in front of him. He eats really well and will insist he eat off our plates sometimes. Mason now has 3 teeth! His first top tooth popped through the other day. And I can almost see his other top tooth coming through. It's just a matter of a few days! Mason has learned to gimme five and has learned to clap this month. He is learning quickly! I love seeing him learn new things! He also has learned how to pick up little snacks and put them in his mouth. 
