Wednesday, August 27, 2014

Life

It has almost been a year since I last updated! One thing is for sure, life is busy! We have had a few changes in our household over the past year. First, we bought a new house!  Our old house was full of a lot of room for us to spread out, however it was also full of stairs. It had four levels which made it difficult for Jacoby to get around and be apart of daily life with his siblings, not to mention how hard it is getting to carry him from floor to floor. Our new house is a ranch style with a finished basement.  This makes it so much easier for Jacoby to be part and only one set of stairs to carry him up and down. The kids spend most of their time upstairs, so Jacoby scoots around to follow them. He is really good at it and can get places pretty quick. Second, Lee is now the head boys basketball coach.  This is a really exciting change for him.  Last year he was part of the high school girls' coaching staff and they took the state tournament. Now he is going for the win as the head coach of the boys.  He also transferred schools this year and is working at the high school. He has really enjoyed the change so far this year.  The last big change for us this year is my change in job title. I left the classroom and am now working as a reading specialist. I am so excited for this change and hoping it will be a little less stressful and make our busy home lives a little easier.


Enough about us and on to Jacoby. He has not had another surgery since my last post. Yay!! I am very hopeful that we are done with surgeries. His year was pretty uneventful as far as medical treatment goes. We did have one scare over the summer in July. Jacoby went from a healthy little boy to a very sick little boy almost over night.  Starting on Friday, June 27th he was running a low fever and didn't sleep well. Saturday, fever was gone, he was a little grouchy, but who isn't after a poor nights sleep. Saturday night, fever was back. Sunday he seemed much better, laughing and back to himself. Monday 
I noticed a little cough, but nothing big. Monday night he didn't sleep, cried a lot and his breathing became labored when he was upset. Tuesday morning his breathing was labored all the time so I took him in to the doctor. His regular doc was out of town so we saw the PA. He was given 2 breathing treatments that did not make improvements at all. We were sent home with a script of the exact same thing they gave us (that didn't work) and told to take him to the ER if he got worse. He got worse. His chest was pulling and he sounded awful. I gave him a treatment of a different medication we had at home from a prior hospital stay and it seemed to help, but only for about 5 minutes. Lee took him in to the ER along with the medication that worked momentarily. They gave him another treatment and did a chest x-ray to check for pneumonia.  Everything was clear, but he was not responding to treatments for long. His heart rate was in the 170's and his oxygen in the 80's. At that time a decision was made to send him to Denver and to get him there as fast as possible.  Lee called and I headed up to the hospital. He ran home and packed me a bag and Jacoby and I were off to Denver via life flight.   I was able to call my roommate from college who is a respiratory therapist at Denver Children's. She happened to be working that night so she met us in the ER.  She is very familiar with Jacoby and was able to talk with the other respiratory therapists who were working in the ER to give them a heads up.  They immediately started in to work on Jacoby. He was started on steroids and eventually moved to the picu (pediatric intensive care). They took fabulous care of him and he made huge improvements quickly. We spent 4 days in the hospital on isolation (very trying with a two year old). He tested positive for 3 different viruses that were highly contagious so we were not allowed out of the room.  Lee came to pick us up when we were finally released to go home. It felt so good to walk out of that hospital and Jacoby got the biggest smile as soon as I opened the door to wheel him out.  

While it was a big scare, it was our only scare this past year. Jacoby continues to be an amazing boy. He lights up my life. As I mentioned before, he scoots every where. Quincy occasionally tries to scoot with him, but Jacoby is way better then him. He can push himself up to a sitting position from the floor and is trying to pull up on things. I believe this is the year, I have high hopes for him that he will learn to walk this year.  We are off to Denver again on September 8th for his oodles of doctors appointments.  On my last post, I mentioned his growth and the growth hormone injections. He had a little spike in his growth, so as of now he is not on injections. One of the appointments we have on the 8th is to see if he has continued this spike or not. If not, he will start back on the injections. :( I am praying this is not the case, although he needs to have a major growth spurt for him to stay off of them. 

Thank you for your continued prayers for Jacoby. He continues to amaze me all the time. 

......





Wednesday, October 30, 2013

Never Giving Up

I have been meaning to get an update written for some time now, it just never seems to get done! I have a lot of things to tell you all, so I will start all the way back from surgery in September.

Jacoby did very well post surgery and we survived the time of having to lay flat for 24 hours post surgery by going on a lot of wagon rides. Quincy ran in the hallways and I pulled Jacoby in the wagon all around the hospital several times. Once he was allowed to sit up, he was so happy! We didn't have any leaking from the incision and we were released to go home the next day. His stridor continued so they sent us home with breathing treatments. 

While we were in Denver I received an email from Dr. Mirzza, who works with Dr. Dobyns in Seattle, stating they had some information regarding Jacoby's genetic testing and to contact her if I was interested in talking more about it. (That may seem like an odd thing to say "if I am interested" however we did enter a genetic study they are conducting which is why it's an if.) I emailed her back right away because I definitely want to know everything.  I didn't hear from her for a few days, so I grew impatient and called her. Thankfully, I was able to get her the first time I called and we visited for 45 minutes or more. What they found is a gene mutation on a gene called PIK3CA, which confirms that Jacoby has MCAP. This opens up a wide range of emotions, nice to know for sure (since we have gone from MPPH to MCAP) however it means it's for real. There is no second guessing, or denying. Usually  MCAP is a mosaic mutation, meaning it is not found in every cell in the body. This is because the mutation usually happens after initial fertilization and the cells have divided several times creating 'normal' cells before the mutation happens. This means the mutated cells along with the normal cells are replicating, thus creating some mutated cells and some normal. It also means Lee and I did not pass this on to Jacoby. It was an error that happened, so our other kids are at a less then 1% chance of passing this on (the same as the normal population). This would mean for Jacoby, however that he has a 50% chance of passing it on. But with Jacoby they have tested two different samples. One being skin and the other being saliva. They have found the mutation in both of these samples and are now testing his blood. If they find it in his blood then it is likely it is in every cell of his body and his mutation happened very, very early on, like right after fertilization. This also will mean he is not able to have children without passing the mutation on.  The good news is just because the mutation is in every cell does not mean he is worse off over someone who only has it in some cells.  I visited more general with Dr. Mirzza regarding Jacoby as well. We talked about his polymicrogyria (PMG) and his risk of seizures. She told me the longer he is seizure free, the better and not having them in his first year of life is a good sign. He is now 18 months and remains seizure free, so we are on a good track!  She also told me his PMG is more on one side of his brain (slightly on the right, more on the left) and it is a pretty small amount, which is good!

Last year at one point I wrote about feeling like it was my fault that this happened to Jacoby. I carried that around with me always because early in my pregnancy (before I knew) I was having some testing done on my gallbladder. I had gone in for a test that required radiation. I didn't tell anybody about this because I really couldn't handle putting it out there that it really could have been my fault. I felt awful and cried often about it. I finally gained the courage to ask Dr. Mirzza about it while we were talking, a huge step. This could confirm my thoughts. She told me that this mutation is not caused by radiation and it was not my fault! This relieved me greatly and lifted a huge weight off my shoulders. While I still hate my son has this obstacle to over come, I truly an relieved that I didn't do it to him.

As I have written about before, Jacoby's growth has been an issue. He started out at the 95 percentile for everything. Then his head continued to grow and went off the charts and his height and weight very slowly increased which caused his growth curve to spiral down to where his height is now going off the bottom of the chart. We met with a nutritionist to ensure Jacoby was getting everything he needed and we increased his caloric intake. His weight began to go back up, however his height has continued to be very slow in growth. His endocrinologist along with his pediatrician, who also specializes in endocrinology, agreed that he should start growth hormone after a series of tests and his actual growth hormone levels being low. They would only be giving him enough to replace what his body was not making. This is quite a process with insurance to get them to pay for his meds. It is very very expensive and it has been quite a battle. While we were waiting, the prescribing company sent us a 30 day supply free to get us started. I was trained by a nurse on how to administer his daily (yes daily) shots and we got started. Jacoby and I both hated this very much! After about 2 weeks on the medicine Jacoby stopped sleeping and even started with bloody noses during the night. This was quite a fright the first morning I found him covered in blood! I called his doctor and we decided to take him off the medicine and see if things changed. It did, he went back to being himself and he and I were much happier not having to do the shots. I recently spoke with his endocrinologist and we are going to wait until his next appointment to decide if he will go back on, on a smaller dose. She is going to look into things a little more since Jacoby has an overgrowth syndrome to ensure that the hormone wont cause any problems with that. 

We are headed back to Denver on the 4th of November for a series of appointments. He will see his neurosurgeon for a post surgery appointment, his endocrinologist for everything, and he has to have an ACTH test. His thyroid function continues to fall so it is likely he will need thyroid medicine. However, before that can start we have to check that everything else is functioning and he is producing enough of a specific hormone. So he will have a blood draw, after fasting for 12 hours, given an iv, administered medicine, another blood draw, and a finial draw a little later. I am not sure how long all of it takes, however he cannot eat or drink anything but water until it is all finished. I am not looking forward to that!    

Jacoby has continued to do amazing things! He always wakes with a huge smile and is such a blessing. He took a slight dip in saying ma ma and mom, but it is back and he actually calls me mom! He also calls Lee dad and loves his daddy so much. When Lee gets home at night, he gets so excited! I love watching his excitement. He is standing, with assistance, for about 6 minutes and is continually getting stronger.  The biggest news is, He is on the go! He has to have motivation to go, however he can do it. He pulled himself across our living room for some applesauce (motivation). I have a video that I will attempt to add. He isn't super confident in himself to go and won't choose to do so on his own, but its a step! 

We have kind of settled into a routine of things at home and I have fallen into an acceptance of the set backs Jacoby has. I continue to pray over him daily, as I do all my children, but I have gotten "comfortable." The Lord has really spoken to me about this lately. I say fallen into an acceptance because my fervent prayers have slowed.  And why? I don't have to accept this for Jacoby, I can still pray for healing. Just because the gene has been identified, doesn't mean it has to identify him. Just because the PMG shows on his MRI's doesn't mean his brain can't re-route around the damage and learn to function normally. I was reading on MCAP a little more deeply and I read that it is very rarely reported that a child with MCAP does not have delays and learning disabilities. Why do I have to accept that? The answer is I don't. I serve a God that is bigger then MCAP. I serve a God who can heal my son. I serve a God that calls us to pray over the sick. My God is bigger, so why have I given up on Him?  I don't know what God's plans are for Jacoby, but I do know that I am going to keep praying for my son. 







Saturday, September 21, 2013

All tucked in..

Sorry I didn't get this updated last night. By the time I had a chance I was exhausted. 

First let me go back a little. Several people have asked why he had surgery. He had a tethered cord. Your spinal cord is supposed to hang free in your spine and end up around your belly button area. In utero during development Jacoby developed fat inside his spine (there shouldn't be fat in there) which took up space and caught his spinal cord. As he grew his cord pulled tight and was not allowed to hang free. During surgery they cut into his spine, broke a little bone off and cut in a little sac that houses a lot of nerve endings. Through a microscope the could see the fat and were able to clip it, thus releasing his spinal cord. 

He did fabulous during the surgery. The surgeon said he had more fat in there then what he had thought from his MRI scans, but that didn't change anything. He has to remain laying down and cannot sit up until 1:00pm today. When we stand/sit spinal fluid runs to the bottom. Since he has an incision there he has to lay down to avoid leaking. After 1:00 today he will be allowed to sit up and we will watch his incision site closely to ensure there is no leaking. As long as it all goes well we should go home tomorrow.

Jacoby also developed strider from the surgery. That is swelling of the esophagus from the breathing tube. This has resulted in a few breathing treatments to help open that back up. 

I was able to return to the motel last night with Quincy, so I rested well. Lee spent the night here with Jacoby with all the activity so he is quite tired. We will switch roles tonight.


Friday, September 20, 2013

All too familiar

We are back in Denver at The Children's Hospital for Jacoby's 3rd surgery. The day has proven to be a long one, as they always are, but today exceptionally long. Jacoby was supposed to be first on the surgery boards today, but a more urgent matter arose so he was pushed back. His time was rescheduled for 1:30pm which makes it really hard for him and Lee and I. The last time he was allowed to eat was at 6:00 am so we woke him at 5:45 to get something in him. That messed up his whole day. After eating he was fully awake so no going back to sleep. When he was ready to go down for a nap it was time to head to the hospital. After all the poking and prodding and he was starved, they took him back. I was able to accompany him back while they put him to sleep. That is one of the hardest things for me. I want to go back and be with him until the last minute, but watching him fight it then go limp and having to leave him there is so hard for me! I'm trusting The Lord and know Jacoby is being watched over by The Mighty Healer.  


It's been 2 hours since I left him as I sit and write this. I'm anxiously waiting to get back to him. We will remain here at the hospital for a few days post surgery, then will head back home to the story of life. I will update once he is out of recovery and we are all settled in his room. 

Friday, September 6, 2013

A Little Boy

I started writing this blog a few weeks ago and didn't get to post it, so here it is.

I can't believe the end of the summer is upon us! I enjoy my time at home with my kids so much and the time just files by.  I spent today hanging out with the boys and something amazing happened, Jacoby turned into a little boy. While yes he has always been a boy, today he wasn't a baby.  Today he didn't sit and watch, today he played.  He wanted to push the car back and forth and he even made car sounds! It was more like a growl and not a car but he did it. He hasn't been enjoying his time in the bath lately and hates when his brother splashes and water gets in his face. Today, he splashed like crazy! Jacoby doesn't put things in his mouth. He never has, but today everything went in his mouth. I loved every minute of it. Final thing today, he threw a fit. He is a very easy going little guy that doesn't get mad about much, but today he arched his back and got mad about getting in his car seat. It wasn't major but he definitely showed his dislike for the car. It was a fabulous day and I am feeling so blessed that he chose to turn into a little boy today with me before I went back to work. God is amazing in insuring I get to experience these moments with my little boy!

Jacoby's legs have been stronger and he is beginning to put some weight on them and is standing with the support of the couch. More recently he has started to trust himself enough to just hold on to my fingers and stand. In therapy he has been working on leaning forward and engaging his legs to either stand or keep himself from falling forward. This is not one of his favorite things, matter of  fact, he gets pretty mad and fights his therapist. 

Jacoby is still nonverbal but lately has been babbling a lot with a lot of new sounds. He finally started with the mamama. I was so happy to hear it, even though he wasn't saying ma ma, it was just awesome to hear the new sound. He has been doing the da da da sounds for awhile, which Lee always gloated about that he must like Dad better then Mom. Now the score is even. :) 






Friday, July 26, 2013

So much to report

Wow, it has been a really long time since I updated! The end of the school year kept us so busy that I decided I would write once summer arrived. Now summer has almost gone, so I'm making myself sit down and write. 

First, slight change in everything. Over spring break Lee, the boys and I went to Seattle to see Dr. Dobyns (Jacoby's diagnosing doctor). Jacoby's original diagnosis came from Dr. D and crew looking over his MRI's. At that time they felt he had MPPH, however after we met Dr. D he changed his diagnosis to M-CM.
What this change means for us- not much. It is very closely related to MPPH, just explains a few other things with his body. One thing that Dr. D said was he has not seen a child with M-CM not walk. So it might take awhile, but Jacoby should walk! 

Since my last post, Jacoby has been working so hard! He sits up like a champ now, although he gets lazy sometimes and lets his belly support him. He more recently has started using his legs! He will stand, with the assistance of the couch for balance, for 1-2 minutes! He also has started to push against something to move across the floor to get what he wants. He needs a leg or hand behind him to do it, but this is so much more then he would do before. He fights his therapist, but does do the work. 

On April 13th, the boys turned a year! I can't believe it. We survived the first year that everyone says is the hardest with twins. It indeed was a tough year and I am ready to move forward. I can't wait to see what Jacoby is doing by the time he turns two. 

One difference I have noticed between the boys and the girls is their reaction to the cake. The girls both picked a little and were very unsure of the cake. They maybe ate a few bites. The boys.... a total different story. They tore into the cake! It was a great celebration. 


As you can see in the pictures, Jacoby has been rocking a Mohawk! I wanted to cut it for awhile, but wanted to wait for the first birthday. Lee was not so anxious because he feared that it would make Coby's head look bigger. I on the other hand couldnt wait and I was at it shortly after the first birthday and he loves it. Not to mention he looks so much better with the extra height gone. 


One thing we are blessed with during the summer is the visit of our oldest son, Kayden. He is the best big brother and the boys love him. He got in a lot of snuggles with both boys this summer. 

This summer we also did a lot of traveling. We were able to meet a couple of families with boys who have the same diagnosis as Jacoby. It was so great to get to visit with their families and talk to someone who "gets" it. Both families have been going through this longer then we have so it was nice to be able to ask questions and have the chance to learn from them. 

Jase is two and we met them in Utah. The boys spent the day swimming.

Luke is 3 and they live in St. Louis, MO. They were in Seattle the same time we were this summer! 

Finally, the most recent news. We just returned from Denver forJacoby's many check ups. First, he had an MRI to check on the effectiveness of his ETV surgery from October and had a spinal scan to rule out a tethered cord (something Dr D suggested we do).  Then we met with his neurosurgeon to review all scans. His ventricles seem to be stable at this point and his head is actually starting to show a growth curve! We were then told Jacoby has a tethered cord and will require surgery to fix it. A tethered cord
involves the pulling of the spinal cord at the base of the spinal canal, literally a tethered cord. The spinal cord normally hangs loose in the canal, free to move up and down with growth, and with bending and stretching. A tethered cord, however, is held taut at the end, or some point in the spinal canal. Common with a tethered cord that Jacoby also has is fatty tissue in one of the ligaments in his spine, which is not supposed to be there. They will have to clip that while they are in there. His surgery is scheduled for September 20th. 

After we saw the neurosurgeon, we met with the endocrine doctor. Jacobys height has continued to drop on the growth chart and is now off the chart. His growth hormone levels are low so he will be starting growth hormone injections that I will have to administer daily. This makes me extremely nervous! 

Thank you all for your continued prayers and support.








Monday, February 18, 2013

I survived

Both boys came through surgeries well. They both are very sore and cranky. I survived as well. It was definitely hard to have them both taken from me. There was about a 10-15 minute lap where Jacoby was in recovery but not awake enough for us to see him and Quincy had gone back that I felt very empty. Not having one to hold was hard! I checked in on the bogo deal of buy one get one free, but it turns out that doesn't work with surgeries. I even offered to pay for the more expensive one :)

We are headed home and are hopeful that we won't be head to Denver Children's for about 4-6 months. :) Next stop, Seattle.