McKay update

So I have been putting this update off forever. I would just keep saying "Oh, I'll update after that Doctor appointment, or that one." But recently the Doctor appointments have been never ending. So that idea isn't going to work. I never know if people want to know all of these details either. But I figure it is good journaling. I just hope people don't think I am complaining about it all, or that it is a major downer. That is not the purpose of these updates!
So last I updated was March (yikes!) Pretty soon after we got back from Seattle we had another sleep study done on McKay to see if removing his adenoids in November had resolved his sleep apnea. While I am happy to report it has for sure improved his sleep apnea; it did not cure it, bummer I know. It did dramatically help his sleep apnea, but he is still considered to have severe sleep apnea. So he is still on oxygen at night. However the Pulmonologist was very hopeful that he will eventually grow out of the sleep apnea physically and developmentally.
We also went to see our Geneticist in April. We went over everything that the Geneticist Dr. Dobyns from Seattle had said and suggested. Our Geneticist here agreed with most everything (it's a new syndrome so there is some debate on a few things). But he was very helpful and very informative. He added a few more things to the list of things to be keeping an eye on. One mainly being his weight. A year ago in April he was 50th percentile for weight and this April he was 97th percentile, that is a very big jump. We also talked about the possibility of McKay being Autistic and he had us go ahead and take the MCHAT. It basically is the test they have you fill out to see if it is likely they are Autistic. He said there was enough on there to assume that he was most likely on the Autism spectrum. We most likely will be do more with that later once he is a little older. The diagnosis could help us get other services that he needs. He also set up his next round of tests. We ordered a brain MRI, spine MRI an abdominal ultrasound. (more on that later). He also gave us a referral to Neurosurgery, per Dr. Dobyn's requst.
We went to see Neurosurgery in May and it didn't go quite like we would have liked. We went into the appointment knowing that McKay was not currently needing surgery. But that we wanted to set up a relationship with a surgeon because of his high risk of having some sort of Neurosurgery done. The Surgeon seemed really confused as to why we were there, and didn't seem to really care. I was a little discouraged, but not too much because I knew we didn't need anything done at the moment.
May was a very sick month for McKay. He caught some unknown virus's and was out of commission for over 2 weeks. He was having incredibly high fevers and had the fevers for 8 days straight. He had all sorts of testing done and x rays but nothing came back with anything super out of the ordinary (for McKay). Luckily things cleared up the day we were suppose to go to the hospital to be admitted or for further testing.
We saw his Orthopedic Surgeon at Shriners to check his hip dysplasia. They said it is looking better, but we were not out of the clear. They said a lot of times when they have a growth spurts it can get worse. So they will have to continue to monitor him.
We had McKays next set of MRI's done at the beginning of June. It was a lot of testing and he was sedated longer than he ever has been. He was sedated for 2 1/2 almost 3 hours. He had a little bit of a harder time coming out of it and they had to send us home with oxygen. He also threw up on the way home, which he has not done before.
The abdominal ultrasound came back fine and normal. They were checking for tumors in his abdomen. There are other overgrowth syndromes that can have tumors in the abdomen. Since M-CM is a new overgrowth syndrome, they are still trying to figure everything out. So they have been asking all M-CM patients to get ultrasounds to check for tumors. The gene mutation is also in the pathway of cancer, so that doesn't help either.
His brain MRI was actually a little bit improved. His ventricles are still enlarged, but not large enough to shunt. But the area in the back of the brain (Chiari area)  has come down a little bit. It previously was at 4 mm and is now at 2 mm. So that is good news.
However his spine MRI (the one I was least worried about) did not come back fine. They discovered he has a Syrnix or Syringomyelia.  It basically is a pocket of fluid inside of his spinal chord. They see them often when kids have Chiari but McKay's is not at the top like they usually see. His is down at the bottom of his spine. So our Neurologist called us about it and said it was pretty large but wouldn't require surgery right now. But we would need to keep a very close eye on it. He said we would talk more about it at our appointment in August. 
We also saw our Orthopedic Surgeon at Primary's. He said he still does not see any scoliosis. His Kyphosis (curve forward of the back) is the same, not better not worse. He also measured his ribcage for me and it measures about 12-14 months, so still on the very small end. But he said it is growing, so that is all that matters for right now. I also had him look at the MRI of his spine since the Syrnix is in his spine and he didn't have much to say except that the Syrnix was "Substantial" with a worried look on his face. He said we needed to talk to Neurology and Neurosurgery.
 The Doctor in Seattle (Dr. Dobyns') has published the paper of where the actual gene mutation for M-CM is it. It will be very helpful for us and our doctors. They also came out with management guidelines for kids with M-CM. Which will be incredibly helpful, because most doctors here are not really sure how often to be doing testing and things. 
In the meantime we had been talking with our Geneticist about his weight and a few other concerns.We went in to go see our Geneticist this last Monday and we also met with the Nutritionist. They are concerned about McKay's weight, but he is not getting more calories than he should be. So his body just seems to be taking all of the calories and storing them. So the nutritionist has put us on a new calorie counting diet and has cut back on a few things for him. It is going to be hard, I'm not going to lie about it. But the hope is that they can keep his current weight the same for a while. They are hoping that if they can get his weight under control now that we will not have to deal with weight issues down the road. They also ran a bunch of blood work while we were there. They tested lots of different things. One of them being his thyroid and his growth hormone output. The doctor called yesterday and said most of his tests were pretty normal. However his growth hormone was so low they couldn't even get a number to test it. So we are going to have to add another specialist (that makes 10 total) to our list. We will be going in a few weeks to see Endocrinology. Most likely they will test his pituitary gland and figure out what to do about the low growth hormone. He may need growth hormone injections, which is like insulin shots-8 a day. We'll see though, still not sure on all of the issues with Endocrinology.
We also had another Neonatal Follow up clinic. These appointments are good but brutal! We saw Speech/Language-which tested his language at about 11-14 months, but his compression is a bit higher than that. We saw Psychology but Mckay was a nightmare so they weren't able to tell us much. The Pediatrician had nothing new to add (they usually just kind of stammer over everything he has going on and don't know anything about the syndrome). I'll stick to my fabulous Pediatrician. We also saw our Ophthalmologist; his eyes have change a little but not much. They are still crossing, but doing better with glasses. We brought up a new concern that he turns his head to the side a lot to look at things. The doctor wasn't really able to tell us why, because McKay was so uncooperative. But he said he is doing it for a reason, we just can't tell why yet. We also saw an Audiologist who tried to test his hearing. We had been there for 4 hours, run out of snacks, and the I Pod with the Bubble Guppies was dead. So you can imagine how that appointment went. She did however discover that he had an insane amount of wax in his ears. So much in his right that he literally could hear nothing. She sent us home to get them cleaned out by our Pediatrician and re scheduled hearing testing in 3 months. (We had his ears cleaned yesterday, brutal awful experience. One that will now have to be done yearly! Also so incredibly disgusting. It's a good thing our pediatrician and nurse love Mckay so much. He has to be hearing and feeling so much better though!)
On Wednesday we went to go see our Neurologist. We talked about a lot of different things. Talked about his seizure risk and what to do if he has a seizure. They have also decided to do an EEG (seizure test) with his next sleep study to see what the readings are. We talked about his development and how behind he was. We talked about his brain MRI and how good it looked then we went to the spine MRI. It was the first time I had actually seen the MRI and the Syrnix. I was blown away by how big it was. "Substantial" is correct. I was imagine like a marble sized circle of fluid. But it really is not shaped in a nice circle. It is actually a very elongated tear drop shape. So long it goes along about 1/3-1/2 of his spine. At the base it flares out and is almost touching the edges of the spinal chord. There is not a lot of room on either side for spinal fluid to flow. He answered some questions, but said we really need to talk to the Neurosurgeon to get the most answers. He said sometimes they have seen them shrink down on their own. But the fact that his has only gotten bigger is not very encouraging (In the NICU it was 2mm and it is now 10mm). We asked about the signs to be watching for, but there really aren't a whole lot. His muscle tone is already low, and we can't watch his urinary habits because he is not potty trained. We are going to do a repeat MRI in December to see where it is there. The feeling I gathered was that if it is worse then, we will need to go ahead and do surgery. The surgery is a pretty invasive and intense surgery. He said it is basically like going into the brain because you are going into bone, nerves, tissues and the actual spinal chord. There is a very high risk for complications. He said there is a good chance they would put a shunt in. We are very anxious to talk to the Neurosurgeon about it and see what he thinks. We are going back to the Neurosurgeon we saw, mainly because we heard he is one of  the top 3 neurosurgeons in the nation. So even though his bedside manor may not be the best, his surgery skills are. We go to see him mid September.
So yes, there are a lot of new things we are keeping an eye on and in the process of figuring out. But we did have a break there for a little while. So I can't complain too much. I hope at some point they will just stop finding "concerns" but most likely that will never happen.
On the flip side Mckay has been doing very well and is progressing very well. He is now cruising very well along furniture and loves to stand against things. He still is not standing on his own. He has a walker, but is not using it a ton. He get's a little lazy and realizes crawling is faster so he just sits down. We are noticing the same thing when we try and walk while we hold his hands.
His speech has also improved. He has 2 signs he can do on his own, and about 3 he can do with prompts. He has about 4 words that he can say (ball, off, no, and bye).
While his therapy appointments are helpful he has been having a harder time with them. He gets really upset when the therapist try and get him to do things. So we are having a little bit of a harder time with his therapy appointments.
While each day can be a lot with Mckay and he has so much going on, some days it feels nice and normal. He is a happy little boy (most of the time) and has a wonderful personality that is coming out more and more. How we love our Wayster's!
*On a side note, thank you to all of our family and friends who have helped with babysitting. As you can tell it is A LOT of appointments and a lot of trips to the doctor (we set a new record this week with 3 times to Primary's and 1 trip to the Pediatrician, 4 in one week!) I am so grateful to everyone who helps. A HUGE thank you to Kyle's mom who does most of it and is willing to help with the kids at a moments notice, we appreciate it more than she could ever know!

1ST Day of 1st Grade

 

I know it is super cliche' to say "I can't believe I have a first grader!"  But I truly can not believe I have a first grader. I have been super nervous about this day the entire summer. I was nervous for Carson to start a new school. I was nervous he wouldn't know anyone in his class. I was nervous he wouldn't want to go to school. I was nervous he wouldn't get the best teacher (last year was a nightmare!)

I got up early that morning to get ready so I would have plenty of time to get him to school and not be rushed. While I was getting ready in the morning I found myself thinking about Carson and when he was born and how time has flown by. I burst into tears, missing him already.
Carson was super excited to pick out his new school clothes and to be able to use his new "Hurley" back pack. He didn't eat a ton of breakfast (Grandma made him his favorite Pumpkin bread). I think he was a little nervous, and he had had the stomach flu the day before.

Brynn had to have a picture of her to!

Kyle was able to come home for just a really quick few minutes to go with me to take Carson to school. We left McKay and Brynn with Kelli so we could just be with Carson. I was so worried he wouldn't want to go (he had an unexpected hard time at a few of his summer camps this summer). But we got there and he walked right up to where he was suppose to go. His teacher came out and got all the kids and that was it. He turned one last time to wave good bye and I lost it again.
I feel like it is the beginning of the end. I feel like he is growing up too fast and in a blink of an eye he will be in high school.
I was pretty much worried for nothing. He has the 2 friends in the neighborhood that are 1st graders in his class (yes, a big answer to prayer). His teacher is absolutely AMAZING!!! She has already been so good with him and is the perfect teacher for him. He loves the school and loves eating school lunch (most days).
He has not loved getting up in the morning and having to get moving and get going. He asked the 3rd day, "Why does 1st grade have to start in the morning?" in a super whiney voice. Then he asked if 2nd grade started in the morning too. The he asked about high school, I told him it only gets worse.

Look at these cute kids...

 I'm one lucky mom....

LOVE

N-Non stop fun @ Boondocks

 So our Lagoon day turned into a little bit of a bust, so we tried to make up for it by having a fun day up with cousins in Kaysville. We started the morning off with the men/boys going golfing. The rest of us headed over to the Farmington trails. We started by the duck pond and fed the ducks. The girls rode their scooters down the trails and we pushed the boys. We also did all of yearly blackberry picking while we were there. There were a lot of blackberries to pick this year! They seemed to have more thorns than usual, but I came home with a full bucket full.

 The girls mostly just rode scooters and played on the trails. They found this chair tree someone had cut out this last year.

 Afterwards we headed back to the Smith's house to have some water fun. The kids played in the pool and put the sprinkler under the tramp and had a lot of fun.

 We had a yummy Mexican lunch at the Smith's while the kids played. We all just sat outside and visited while the kids played and the youngest boys napped. It was a lot of fun and very relaxing.
After the boys woke up we headed over to Boondocks. The kids of course had a blast and were running from one thing to the next.

We had to kind of rush towards the end, McKay really wasn't feeling well and was getting cranky. (Found out later he had Pneumonia). But we had a really fun day up in Kaysville and with cousins and family. I think it was a really fun end of summer day!

H-H2O fight

 So I saw that they were having a giant water fight at Thanksgiving Point for one of their family nights in the Gardens. I thought we could take the kids to that for our water fight. The kids had a lot of fun. Kyle stayed home with Mckay because he had a fever. So I took Carson and Brynnley, Sadie, and Kyle's dad came with me to help with the kids. They had lots of fun stations set up with different water activities. They launched sponges into a target, they had a bubble station set up, and they had an activity where you had to throw balls onto targets into kiddie pools.

 The main attraction was the giant water slides they had set up by the waterfall. They were a lot of fun. There were a lot of people there and long lines, but the kids still had a good time.

E-Este's Park par 3 (last one I promise!)

 So the last few days we were there were jam packed. The men started out Monday morning by waking up super early and heading up the canyon to go on a hike. Kyle sent me a few pictures from the hike and it was beautiful. I think they had a great time and saw lots of animals. They stopped and picked us up some doughnuts on their way back to the hotel. We had seen a little doughnut shop called the "Doughnut Haus". We loved joking about it and saying it in a thick Sweedish accent. The doughnuts from the Doughnut Haus were yummy! After doughnuts we headed into town to do some shopping. The main road was filled with super cute fun shops will all sorts of things in them. The kids actually did surprisingly well with shopping! The kids really wanted to go into the Christmas shop and pick out ornaments, it was a big highlight for them. I bought a new scarf as my souvenir and Kyle bought a couple of shirts (more on that later). We also bought some yummy kettle corn (we maybe had to go buy a 2nd bag because Brynnley and I downed the first so quickly) and we went to an old fashioned candy store. We gave each of the kids a bucket at the candy store and let them pick what they wanted, the phrase "a kid in a candy store" could not be more true! We had lunch at a pizza place by the shops then headed back for some swimming. That afternoon we headed over to go mini golfing. We had to kind of rush our golf game because an afternoon storm was rolling in. But we still had a lot of fun, and miraculously David won. (He is notoriously known for cheating at mini golf). For dinner we headed to a nice steak place in town. Kyle's Grandpa was nice enough to treat us all to dinner. It was so nice having him there with us. I am so glad that he came, I know my kids loved having him there. I know it was a little loud and chaotic but I think he had a good time.
I had to snap this pic of the kids while we were waiting for dinner. Tired would be an understatement, so the only way to keep them from whining and bugging each other was for them each to have a phone to play games on. You can't even see McKay who had the I Pad to watch bubble guppies on as well. What would we do without technology!

 After dinner we headed back to the hotel. Our hotel was right on the river and had a little playground next to the river. So we would go to the playground and wade feet in the river at least twice a day.
So Kyle walked back from dinner after us, he wanted to hit a couple more shops and said he would catch up. Look at this gem he found at one of the stores. He was determined to find an "awesome" animal shirt to remember the trip by. I think he for sure succeeded!

 On our last day we headed back into the park. We went on a short hike to a waterfall. We had borrowed my sister's backpack for McKay for hiking. I was shocked how much heavier he felt on my back. So we did the short version of the hike. The men took the older kids up to the top of the waterfall. Carson is for sure my adventurer. He would climb any rock he could find and was always looking for "secret passageways". It was a fun hike and the kids loved it. We were going to go on another hike later that evening but it started to rain so we decided not to go.

So here is my story about this guy. About 2 nights into our stay Mckay had decided he didn't want to sleep. He woke up at about 3 am and despite all of my efforts he would not go back to sleep. So at about 5 I decided to take him outside for a walk so the others could sleep. Brynn woke up because Mckay was crying and flipped out because I was leaving. So she came outside to walk Mckay with me. So me, Mckay and Brynn outside in our jammies walking the streets of Este's park. I was trying to stay positive and remind myself we were having a good time despite it being 5 am, I looked up and saw a beautiful deer just walking down the street. We walked another 1/2 hour and I spotted 2 elk. So I rushed Brynn over to where they were and we watched them eat breakfast. I noticed one of them had something on their antlers and I really thought it was Christmas lights, but thought "that can't be it". After everyone woke up I told them about our animal sightings. I told them about the Christmas tree elk and they looked skeptical. Later that night we were walking back to the hotel and spotted the 2 elk again. Kyle was able to get up close to them to snap a picture. He also confirmed that the elk I saw did in fact have Christmas lights on his antlers!
We had such a fun trip. I am so glad we were able to go and a big thank you to the Ford's for making it all happen!

E-Este's park part 2

The next day we woke up early to head into the park, we were hopeful that if we left early we would be able to see more animals. So we woke up early and got breakfast and headed up. There is a small one way dirt road that winds through the forest and leads to the top of one of the mountains. There is almost a guarantee you will see animals on the drive up and at the top. The road was incredibly whinedy and small, but it was a beautiful drive and we did see some animals. We saw lots of birds and squirels and some marmots. Carson said he saw a big horn sheep, somehow no one else saw it though.
We stopped at a few places along the way and got out to check out some waterfalls. It was beautiful!

We were really excited to see that when we got to the top there were herds of Elk. We watched them climb up the mountain, cross the road and go over the top. I was so glad we were able to see them and the kids loved it!

It was beautiful up on top!

Afterwards we drove back down (not the scary whinedy road) and we stopped at a picnic area for lunch. The kids were able to run around and look for nature treasures. It was a lot of fun! I had to include this pic of Brynn, she found this stick and said it was her antlers. Doesn't she kind of look like Max from the Grinch.

We went back and just relaxed and went to the park and waded our feet in the river while the boys napped. It was rainy that afternoon, so we didn't go swimming. After the boys woke up we went to go see the movie Brave. The kids all loved it! Afterwards we went back and grilled hot dogs and brats. Our plan to roast smores was a little dampened by the rain. But we still made it work!

E-Este's Park Part 1

So those that know me well know I am a big time planner. I don't know why but I feel safer with a plan. I feel sorry for Kyle because I think it is getting worse the older I am getting. Anyways... last year we were on our drive to Disneyland and David was riding with us and he said he wanted to start making plans for our family trip for next year. ( Truly a man after my own heart, he loves plans even more than me!) Anyways we all decided to go to Este's Park Colorado. I said sure without even really know what it was. 

Every time I told someone we were going to Este's park Colorado they would say "Oh, where is that and what is there to do there?" I would answer, I'm not really sure but I think it will be fun! A fun trip would be an understatement, we had a blast! I loved Este's park and would highly suggest it for a family vacay. My kids have already asked to go back.

It is a little bit of a drive (about 8 hours) and we left a little late so that Carson could finish golf camp. So we pulled into Este's park pretty late on the first night. We got into our hotel and hurried to get our things in and get tired kids to bed.

The next morning we woke up ready to go. We started out the morning by heading up to the Este's Park National park and driving around a little. We got out and walked around a few differnt trails.

Afterwards we headed back into town and went to a park called Fun City. The week before we went on vacation we had gone to the carnival and Carson was obsessed with the giant slides. He was so excited when he found out there were some slides Este's park. So we went and did the giant slides, bumper water boats, and the go-karts while we were there. The kids had a blast! We had so much fun in fact the kids begged to go back another day, so we stopped another day later in the week for just a little while.

 For lunch we headed into down town and stopped at a cute little diner. Kyle said his goal on the trip was to eat as much wild game as possible. I think he ate a lot of wild game, things I would never have tried! A buffalo burger, elk burger and yak! If it was up to him I think he would have tried even more.

 When we were checking on hotels for Este's park I said my one request if possible was to find somewhere with a pool since my kids are such fish. When we got to the hotel we were a little disappointed our rooms weren't closer (we had to get 2 rooms to fit us all), and the rooms were a little old. So I was feeling really bad I had been that had wanted to find a hotel with a pool, because the choices of hotels with pools were a little limited. But I think finding the place with the pool was for sure worth it. We went swimming every day but one. We took the older kids swimming while the two little guys took naps. It was a huge lifesaver and the kids literally were pruney fishes by the end of the week!

 That night we picked up some KFC and took it back into the park. We took it to a nice big meadow area where we were hopeful we would see some elk. We of course didn't, but it was beautiful up there and we had good food and lots of fun!

Olympics London 2012

 So I have been super excited for the Olympics for about 2 years. I love the Olympics! I love watching the opening ceremonies and watching what creative and interesting things they come up with. I love watching most of the sports. I love the comrodorie of all of the countries and the compettivie spirit. I wanted to try and make it into a special thing for my kids so they could see how awesome the Olympics are.
The last Olympics (Winter of 2010) were literally right when McKay was born and in the NICU. It was a miserable time and honestly I don't remember watching a single sport. I do remember coming home one evening from being at the NICU and Kyle asking if I wanted to watch. All I wanted to do was cry and go to bed. 

 So since the Olympics were in London I thought it would be fun to have a British meal for dinner before the opening ceremonies. I went out on a limb and made Shepherd's pie. It turned out really good and was delish! My kids of course screamed and cried when they saw it, but I knew that would happen. We also had salad and french country bread. Kelli made Lemon Merinuge pie for dessert. We ate our British meal and then watched the opening cermeonys. The kids lasted about 20 minutes and then got bored. They did like the part with all the kids on the beds and Captain Hook and Voldermort.
We have been watching the Olympics every day since then. I will say I think Carson is enjoying them even more than me. He has started to learn some of the swimmer's and runner's names and asks when they are racing. We have let him stay up a few nights and watch with us. Every morning when he wakes up it is the first thing he turns on by himself. He watches what he missed the previous night. He said his favorite is Ryan Lochte. He is also excited to watch the running relay's. It has been a wonderful Olympics and I have enjoyed watching them so much. I am happy to see the Olympic spirit in Carson too. I mentioned to him that he could do swimming races like Michael Phelps and Ryan Lochte and he said he really wants to try swim team next year!

A-American Fork Steel Days Carnival

 I have great memories of going to the American Fork Steel days carnival. I remember going when I was little and thinking it was magical and the best thing ever. I loved the rides (which still are the same) and playing the fun carni games. Once you get past the slight sketchiness of it all it is a lot of fun. My kids were super excited to be able to go again. The Carnival was set for the weekend we were suppose to leave to Este's park. So we had a very small window of when we could fit it in. I decided to go in the afternoon so I could make sure we had time to get ready for our vacation and hope to avoid the crowds. So Kelli stayed home with McKay while he napped and I just took Carson and Brynn.

 They had a blast! Actually that would be an understatement! They were so happy and excited and had a hard time deciding what to ride on after each ride was over.

 Brynn's favorite was the dragon roller coaster, she went twice. Carson's favorite was the huge yellow slide, he went 3 times. I love the picture of Carson and Brynn together waiting in line. He is such a good brother, he was so worried about Brynn being scared. I loved seeing them together.

A carnival trip wouldn't be complete without a little treat, the kids choose snow cones. We will be back next year, and the kids informed me I need to buy more tickets, "At least 100" Carson said.