McKay's new specs

 McKay has been seeing an Ophthalmologist for about a year. They mainly have been checking his optic nerves. Because his head is so large and he is at really high risk for hydrocephalus sometimes there can be pressure on the optic nerves. But each time we go in they have said his nerves have looked great. About 6 or 7 months ago we did notice that one of McKay's eyes was starting to cross in. When I went to the eye doctor he didn't see it until I really pushed to look at it and he noticed it at the end. He said he wanted to see him back in 3 months. So we went to his 3 month follow up a few weeks ago. He started by saying "I think we need to get him some glasses." Um, nope this has never been mentioned before and was a little bit of a suprise. He said he is very very farsighted and it is getting worse each time he comes in. His hope is that putting him in glasses will make it easier for him to focus more easily, thus making it so his eye that is still turning in will help correct itself. His eye is still turning in and it has gotten worse, the eye doctor noticed it first thing this time. He is not positive that the glasses will in fact fix they eye that is turning in but he wants to try it first. We will go back in about 3 months and he will see if has helped the eye that is turning in. If it has not he will then have to have surgery on that eye.

 We didn't get too much of a choice when it came to glasses. I of course first went to the super cute trendy black frames. The lady at the eye store said I really had 2 choices for his first pair. She said he would rip them off, try and bend and break them, and the lens's have to be big enough he doesn't just look above or below the lens. So we went ahead and got him fitted and a couple of weeks later picked them up.

It went pretty well the first few days and has gotten a little worse with time. But we are going to keep on working on it, we are still doing it in shifts so he doesn't get too angry about them. Thank heavens there really isn't a way to break them because he has bent them in every way possible.
I think he looks so cute, so old but so cute. I am going to miss seeing his beautiful shining eyes so easily. But I think they will help him immensely!

McKay signing

So the day I have been waiting for has finally come.  We have known for quite some time that language will probably always be a large struggle for McKay. We were just hopeful that we will be able to communicate with him some way. Whether that be sign language or some words. I have been tirelessly been working on signs with McKay for over a year now with no luck really at all. Just in the last couple of weeks he has grown leaps and bounds in the language department. He now has 2 full official signs "more" and "all done", he also does a sign for car. He can also say "woof" and "dat" for that. It may not sound like much but it is HUGE for little McKay. We are so happy with his progress and so happy that he is able to communicate with us. We are hopeful it only continues on from here! We have noticed he is starting to get frustrated that he can't tell us what he wants, a good sign. We have also bumped up his speech therapy to twice a month in hopes that we can capitalize on his language learning peak.  Here is a video for those that want to see.


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Train show

I love having date night with my little man. We continued our tradition of going to the yearly train show at Thanksgiving Point. Even if you are not really into trains (Which Carson isn't super into trains) it still is a lot of fun. Carson LOVED the giant Lego trains. We looked at all of them numerous times. He also liked being able to drive the trains by himself.

We were lucky enough to go to the train show with his best friend Cohen. (One of his other friends joined us a little later too, so he was so happy to have his best buds there with him). The boys had a lot of fun together and enjoyed running around looking at everything.

The night wouldn't be complete with out a little treat at the end. We headed over to the deli to get some ice cream. Carson picked blue bubble gum ice cream.
I had so much fun with Carson. It was great to spend some one on one time with him and just talk the two of us. He even told me all about school and the girls at school. He said there is one girl who asked to be his girlfriend and is "crushing" (Carson's words) on him. But he told her he already had a girlfriend. His heart still belongs to his girlfriend in Las Vegas.
On the way home he said "Hey Mom, do you think we could go out again?" I asked him where to and he said "somewhere with just us!" Melted my heart. I love Carson so much and I feel as if he is growing up so fast and my time is quickly slipping away.

Grattitude

I consider myself a grateful person, but until 2 years ago I don't think i realized how grateful one person could be for so many people. It is no a secret that I have to ask for a lot of help, I mean a lot of help. From friends and family. It is hard for me to ask for help, I would much rather be the one offering to help. I would so rather volunteer to help with someone else kids, or take a meal than to have to ask anyone for it. But my Mom said it best to me once "Now is your time to ask for help, there will be a time when you won't have to ask and you will be the one able to give." It is true, that it goes in a circle. You never know when you are going to need to ask for some extra help.
I just want to profess to the world how grateful I am:
*How grateful I am to family. Whenever I call to ask for help they are always so willing. I can not even count the number of times I have had to ask my Mom and Kyle's mom to babysit for me. Way too many to count. Not just for Doctor's appointments but even just to run to the store (McKay still can't be out in public this winter). They are always so willing to help. Kyle's dad came with me to McKay's surgery so I wouldn't have to be alone, I was so glad not to be alone. My sister came to help me pack boxes and clean my kitchen before we moved. Both my Mom and Kyle's mom have been there when I needed a shoulder to cry on. They constantly tell me it will be okay, and we are strong enough to get through this.
*How grateful I am to friends. I have asked so many friends with help with the kids in so many situations. So many friends have brought meals. Friends have watched the kids, taken them to parties, taken them to fun activities, and just stolen them for the day. I had a friend who came and scrubbed my bathrooms while we were cleaning the house for renters. Our friends are very near and dear to our hearts and I can't imagine our lives with out their help, support, and love.
*How grateful I am....to those who will remain nameless. People in this world have kind hearts. They do what they can to help... I don't they think they will  ever realize how grateful we are either.
*I am thankful to those who keep our little family in their thoughts and prayers, I know there are a lot out there. The love does not go unnoticed.
*I am grateful for the strength of my husband, because truly I could not do this with out him. He is my rock. He keeps me grounded, and keeps me positive no matter what the circumstance. He leads our family by inspiration, this I am sure of.
*I am grateful for McKay. Words can not express my gratitude that we were blessed with this little angel in our life. When I think about everything he has gone through and will go through I am often reminded that he knew what was going to happen. So many times I find myself in tears because he does not get to experience many "normal" things. I get heartbroken ever time he is sick and it is so hard for his little body. I am grateful for the sweet spirit he is. I am grateful for the continual loves he gives to me and our family.

McKay update, hospital stay, and ER visit

I just love this picture. It is actually from when we went to Disneyland (yes I have been working on this post for that long). He would crawl over to the window and pull himself up and look at California adventure.
So it's been a few months since I have done a update. Honestly I have been dreading it a little bit because so much has happened with McKay in the last three months I knew it would take me forever. But I actually need to do it. I know there are people that get all the details when I post it. Sometimes I have a hard time knowing how much people really want to know. Plus I actually use it as a medical journal for McKay. I have to keep track of so much for him, so I use his updates as a way to keep track of things I need to note. So here goes... sorry if it crazy long!
Last I updated we had seen the Pulmonalogist and had lots of not great news. Soon after that post we went to Primary's to have an Echo done on his heart. Of course now that he is older and has the sleep apnea they have to do a sedated Echo, so we headed up to do a sedated echo. Later that week we were able to meet with our Cardiologist (she saw him in the NICU so it is REALLY nice that she knows his history). She was happy to report that his Pulmonary Hypertension had not returned. He still had a slight murmur they hear every once in a while, but she was not concerned about it. She did say that as long as he has the sleep apnea and is on oxygen/cpap he will need to see her yearly. He will also to have an ekg done every year and an echo done every other year. (Fun, right!) But at least it was good news!
We also were sent to the Cranial Facial Disorders clinic by our Pulmonologist. We saw a Speech Therapist, a Plastic Surgeon, a Orthodontist, and an Ear Nose and Throat. Speech Therapist had nothing new to add, same as the plastic surgeon. The Orthodontist noted he does have an under bite (more fun, right?), his cheeks are set back a little too. Sometimes that can make the nasal passages a little compressed and make poor oxygen flow. It was not severe enough to do anything about any of it right now, just a "wait and see" diagnosis. The ENT was very curious about the syndrome and his story. He said he wanted to do an x ray to see how his adenoids looked. He said his ears looked fine, and his tonsils were not too big. He also wanted to do an overnight oximeter test to see if the oxygen he was wearing at night was actually working. The x ray came back that his adenoids were in fact very large, so he wanted to remove them. The over night oxygen came back that the oxygen he was wearing at night was also in fact helping a tremendous amount. So we set up a date to have his adenoids removed.
The end of October right before Halloween he started to get a little bit of a runny nose. Which usually puts me on high alert, because it almost always turns into something. After having the runny nose for a couple of days he woke up one morning extra cranky. He had a fever of about 101 so I decided to put him down for a morning nap. He slept for a while then I heard him wake up with a really weird cry. I rushed in to see him extremely pale and not acting himself. I took his temp and it was 105.6. I immediately panicked. I decided to take him to our doctor first before Primary's. He was not acting himself, I could get him to calm down and was inconsolable. By the time we got to the doctor his fever was down to about 104. Our Dr was pretty concerned, so he sent us to the hospital to have a chest x ray done as well as blood work, and a virus panel done. The results came back that he did not have Pneumonia, but 2 nasty viruses. One that causes extremely high fevers. So the Doctor said to keep an extra close eye on him, keep track of his fevers, keep him hydrated, and he said he was slightly hopeful we would not have to be admitted to the hospital but was not sure. We spent the weekend pretty miserably, his fever jumped all around from 101 back up to 105 a couple of times. It was really scary. We were able to keep him somewhat hydrated as too. By Monday the fevers were a little more under control, but his breathing now sounded funny. We rushed back into the doctor to find out the viruses had turned bacterial and he now had Croup and Pneumonia. Luckily we caught it early enough he did not have to be hospitalized. He had 4 shots of antibiotics, and two steroid shots. It was  a brutal week.
We decided to have his adenoids out right after Thanksgiving. It wasn't great timing because Kyle was gone on business for a full week. But it really was the only time we could fit it in, and the doctor could fit it in before the end of the year. The actual surgery was pretty fast, however the Doctor called me midway through the surgery and asked if they could scope his airway, it seemed a little small. The surgery went well and the doctor came out to talk to us afterward. He said when they did the scope they noticed his airway was very small, the size of a newborn. So they had to use a much smaller tube then they should have to use. I asked what they wanted to do about it, or what the future meant for that. He said he wanted to scope it again in the Spring and see if it had grown at all, and he wanted to talk to our Pulmonolgist about it as well.
McKay woke up from the surgery extremely cranky. He just kept crying and whimpering. His oxygen was all over the place as well so they had to put some extra oxygen on him. They also had to give him two shots of steroids to keep his airway open, because it was so small and swollen it was not staying open very well. We stayed overnight so they could monitor him and his oxygen, and I am so glad that we did. I just felt a big sense of relief knowing we were there if something went wrong. We woke up the next morning and McKay was back to normal. He oxygen was good, and he looked good. He was still having some noisy breathing so they said to keep an eye on it.
We got home and the next day went fine. The day after though he spiked a fever of 103, so we rushed him into the doctor. He said he didn't think it was adenoids, but was worried he might have aspirated and now had Pneumonia. He called the ENT on call at Primary's and they both agreed. So we went to the hospital to get a chest x ray, but it came back fine.  So the doctor said to keep an eye on him and call him in the morning. I went in to check on him about every hour that night, at about 5 in the morning he sounded funny so I went in. His fever was up to 105.7. I immediately called Kyle panicked and we decided I should just take him to Primary's. By the time we got to Priamry's his fever was a little down. The doctors were a little perplexed as to what it was. They drew blood, did another chest x ray, and got a urine sample. They said he was dehydrated so they had to put him in IV fluids. They also had an ENT come down and look at him. After hours in the ER they said they thought it might just be a virus and sent us home. We did fine out a few days later, he had caught the same 2 viruses he had at Halloween while he was at the hospital for surgery.
We recently went back to the Pulmonlogist to check on everything. The good news was that his chest size had actually grown a little bit, so we were all happy about that. He said they were concerned about his airway. There is a chance they may have to do surgery to open it up, but they really don't want to have to do it unless necessary. He also looked at the x ray that had been done a few weeks earlier and compared it to the x ray he did when we last saw him. He said the shadowing on his lung didn't look any worse, but it didn't look any better either. But he couldn't give an accurate answer about it because it actually takes 6 weeks for a virus to be out of your system and lungs. It had only been about 4 since he had the virus's. He said he wanted to do another sleep study to see how is oxygen levels were and how much removing the adenoids had helped. So we have a sleep study scheduled in April to see how things are going. If things are the same or worse they will then put him on CPAP. He pulls the oxygen off pretty much every night now, so it is really hard to keep it on him.
We also had a brain MRI done the end of December. I was pretty anxious for this to happen, he has not had an MRI since last August. The brain and head is the main part of syndrome he has and so much can change so rapidly.  They were a little extra cautious this time with McKay, because of the sleep apnea and the small airway. ( I am super bummed, we can no longer have any procedures done at the Riverton Primary's, he is too high risk.) This was the first time they have ever had me be with him when they sedated him. They don't like to give him the drug that calms them down pre sedation. It slows the breathing down, so it is not good for those with sleep apnea. I told Kyle he didn't need to stay, no sense in both of us being there for something so hard. I am glad I have not had to do that before, it was awful to watch them shove the mask on him while he screamed. The doctor warned me their breathing got sporadic and they usually turned red and purple. All of which he did, it was horrible. He fell asleep pretty quickly and they took him for the hour long MRI. His breathing was a little off afterwards but we were able to go home after a few hours in the PACU.
We talked to our Neurologist the next week to go over the results. I called to get the results and I was very relieved our doctor called us back, and not a resident. He said the results were abnormal, which we already knew. The good news was his ventricles were now a normal size. The ventricles are where there is a big risk for hydrocephalus. His were previously enlarged, but are not in a normal range. The area in the back of his brain is still growing a little too much. It is called Cerebrrall Tonsillar Herniation, his still is not a severe case and it has not gotten a ton worse. They will have to continue to monitor that, in hopes he will not require surgery. The Neurologist did say he believed he did have a second syndrome in addition to the M-CM syndrome. It is just a syndrome of the brain called Perisylvian Polymicrogyria Syndrome. You can google it if you want. McKay is not on the severe end for this syndrome. It probably is the cause of his eating problems, his mouth constantly being open,  and speech delay. It also has a very high risk of epilepsy and seizures, but they don's present until about 4-12 years old. So we are definitely not out of the woods for seizures. He also has cortical dysplasia, which means the edges of his brain are thicker than they should be. This can cause learning problems, some can have a mild delay, others can be a severe developmental delay. Our doctor was very anxious to hear what the Geneticist in Seattle has to say. We have decided to take McKay to Seattle to see the doctor that diagnosed him. He is the leading doctor in the syndrome he has and is currently working on finding the gene where it is located. We will be going in March to see him. We hope it will be very helpful and informative and be able to give us some direction.
It has been a very busy few months and we have been to Primary Children's more than I thought possible in 3 months. I am very grateful to have such an amazing children's hospital close. Even though most of our specialist don't have the answer and are not sure what to do about McKay, I feel like they genuinely care about him and are trying to help as much as they can. There are still a lot of unanswered questions, but I think there always will be with McKay.

Merry Christmas

We had a wonderful Christmas. I am very glad it finally all came together. We decided to change the day that we moved in with the Ford's up a week. In hindsight I am really glad that we did. But the week leading up to Christmas was a little crazy. I was out shopping on the 23rd of December which I NEVER do. On Christmas Eve we spent the morning hanging out with the Ford's and the Smith's. We made Santa's cookies on the 23rd, this is one of my kids favorite activities. We went to see the Muppets the afternoon of Christmas Eve. David and I missed about half of the movie because of a frantic phone call that the fire department was at our Lehi house. (Smoke alarms... of course they have to wait until we move out to need battery changes!)

We had a super yummy Mexican fiesta meal for dinner that night! After dinner we went out to drive around and look at the lights. This is one of my favorite things to do. We use to do it all the time when I was little. I can still remember the first Christmas I spent with Kyle's family and they said we were going out to look at the lights. It made me so happy and made me a little less homesick. We didn't stay out too long because we had some tired kids on our hands.

I am SO SUPER mad, but my camera was having major issues that night and the next day. So most of my pictures are blurry... sorry. The kids all loved their PJ's. Carson got an angry birds t shirt to go with some soft pants, Brynn got "warm" one piece pink penguin Jammie's (her favorite), and McKay was a cute reindeer.

We came home and acted out the Nativity story. I had seen a cute idea on Pinterest to make angel wings. So Heather helped me out and we made them the night before for the girls, I think they turned out cute. McKay was the wiggly baby Jesus (Tyler had already gone to bed) Carson and Uncle Jarom were the wise men (complete with beard), and Kyle was a donkey.
After we got the kids in bed we started setting up Christmas. There are a lot of us, so there were a lot of presents. After we were done "eating Santa's cookies" and setting u,p all the adults watched White Christmas. One of my all time favorite Christmas movies. I can't tell you how nice it was this year to have Kyle help play Santa. Normally he is so exhausted from Kneaders he barely makes it to the couch before he falls asleep. I loved having him help and loved being able to spend Christmas Eve with him.

Brynn came running in around 7:30 yelling "Santa came, Santa came!" She of course had snuck upstairs and moved the chair I put in the way to go see the presents. We got everyone up and started with the haul. The kids loved everything they got. Carson got a DS, a Pokemon binder with tons of cards, a new scooter, and a bunch of other stuff. Brynn got her Cozy baby shopping cart she has been talking about for months, her Belle princess and me doll, and a Lalaloopsy. McKay got a bunch of cars, a car ramp, and some hide and squeak eggs.

Note to self, next year just get McKay 6 boxes of Animal crackers. That was all he wanted. It was major sensory overload for him and he had a bit of a rough morning.

Princess Brynn and Princess Belle.

The kids with their new scooters from Mom and Dad.

Carson and Dad with Carson's present for us he made at school.

Carson's reaction to the X Box kinect the Ford's gave us, with the Disneyland game. The Ford's of course spoiled us and the kids. The kids kept opening preset after present. Brynn has so many Princess's and Fairies we could have our own Disney store in her room. Carson loved all the fun stuff that Grandma and Grandpa got him, including his new Hexbug set.

McKay's big gift was a firetruck from Grandpa and Grandma Ford. He loved it! He climbed right over to it and tried to get in. It is for sure his favorite toy. He climbs over to and tries to push around. He can only go backwards right now.
We also opened gifts from Great Grandma and Grandpa Ford. They spoiled the kids as well, honestly they got the perfect gift for each of the kids!

We then got everyone dressed up and headed to church. Jarom had forgotten his church clothes so he volunteered to stay with McKay. I still had to get him dressed up for a cute picture! Church was beautiful, Christmas Sunday is always one of my favorite. After church we came home and were able to Skype with my parents in Africa. The kids loved showing them all of the toys they got.

We also had a super yummy Christmas dinner after church. Kyle's other Grandparents were able to join us as well. After yummy food we opened some more gifts from the Hubbards, they also got gifts for the kids that they absolutely loved!
It was a wonderful day. Full of fun, excitement, family, yummy food, and great memories.