It's the holiday season...

Happy holiday season everyone! I hope the nice weather is making you all as happy as me. I took a long lunch from work today to accompany little man to one of his therapy appointments, and was very pleased for the cloudy day as little man was able to fully enjoy riding around in his stroller with no sun shade. It's the little things in life that make you thankful. :)

Also very happy to report that there's no big news from us since our last few posts. We are scheduled for surgery on January 8th for Jameson to have his bladder reconstruction. Dr Cooper, his urologist, is very confident that he will make it through in no time and with no complications! He is one tough cookie! But other than that, little man has been staying healthy and happy. We started his new seizure medication, keppra, almost 2 weeks ago. It took him a little time to adjust, but he seems to finally be feeling back to his old self.

I'm not sure if I'll post again before Christmas since little man has been doing so well. So until we meet again, have a safe and wonderful holiday season! :)

Thankful

It can be really easy to get into a dark place when you're feeling like the odds are stacked against you. The obvious question, "why me?" can slip into the deep dark crevices of your mind. Being angry about having to watch your child, spouse, parent go through something incredibly difficult. Anger...that's the easy way to deal with it. Perhaps the more difficult way to look at it, is to be thankful. In honor of thanksgiving and having a positive outlook, I'm dedicating this blog post to everything I'm thankful for. 

• I'm thankful for my incredibly selfless parents who've gone above and beyond to help little man and myself when we needed it most. They love him more than anything and care for him as if he were their own. 
• I'm thankful for an amazing group of doctors and therapists that care about Jameson not only as a patient, but as family. They are constantly looking for ways to make his life better. It never ceases to amaze me how much they think about what more they can be doing to help him. 
• I'm thankful for the support I've gotten from a whole lot of people I've never met. Joining online communities of other parents with special needs children was one of the best things I've done since Jameson was born. They are the lifeboat that I climb onto in the midst of the storm. Always compassionate and always there when you just need to yell at the world. 
• And lastly and most importantly, I'm thankful for little man. He is the most amazing soul I will ever know. He is an angel on earth, here to inspire me to be a better person. 

I know everyone has their challenges that they're dealing with both inwardly and outwardly. Sometimes, it doesn't feel like there's much of anything to be thankful for. But I can guarantee you, there is. There is always a silver lining and always reasons to give thanks. :)  

 

Fall updates

This will be just a brief update for everyone on what's been going on with our little man

 There is still a lot of things developing and not yet decided but at least it's a way to give everyone an idea of what's been happening. :-) 

We were at the University of Iowa Children's Hospital on Monday and Tuesday last week for some testing and doctors appointments. On Monday, Jameson had an EEG and a urodynamic study.  The EEG results came back showing that little man is indeed having seizures, but luckily the kind of seizures he's having at this time aren't too bad. Our neurologist gave me a list of some different kinds of anti seizure meds we could try and what their potential side effects could be. I'm going to be doing a lot of research and from there decide what kind of med to try and how long until we start him on it. I don't like putting him on more medication that seems unnecessary but I also don't want things to get worse. Luckily, what hes experiencing right now doesn't seem to have a negative impact on his quality of life. :-)

The other part of our trip was with urology and dealing with little man's bladder and kidney issues. With the test they did last week, he was officially diagnosed with a neurogenic bladder. (I'll dedicate another post to explaining this better as it's complicated but very interesting.)  The biggest problem with his neurogenic bladder is that he isn't fully emptying his bladder and that excess pressure builds up and affects the kidneys. So in the end, the decision was made to move forward with surgery. It was an extremely difficult choice for us to make, but in the long run it is the most realistic thing to do. If we don't get this under control soon, his kidneys will eventually fail and that only leads down the road to dialysis or a kidney transplant. If we can do a bladder reconstruction for him, we can take away the pressure on the kidneys and keep moving in the right direction. More to come on this as well. 

We'll I guess that ended up being longer than I planned but I know people are continually praying and thinking of our little man and we truly appreciate it. Those prayers really do work as he's already been making such amazing progress and will continue to do so as we keep trudging ahead. Thanks everyone! :-)

Updates and haircuts!

Happy Tuesday and welcome back! It's only been a week since my last blog post, but as always there's more adventure on the horizon.

We met with genetics last week and had a nice long chat with our team. As most everyone knows, Jameson is clinically diagnosed with Cornelia de Lange syndrome. (Clinically meaning that he's diagnosed based on physical features.) There are currently 5 known gene mutations that cause this disease and Jameson has tested negative for all of them. So the question is, where to go from here? The next step for us in finding answers is doing a whole exome sequencing test. This is a blood test that looks for any mutations in a person's genes and DNA. For example, when a woman tests for the genetic mutation for breast cancer she's doing a small section of a whole exome sequence. The test they would do on Jameson would test ALL the genes known to cause diseases. And from there, we would hopefully figure out more about why he has developed the way he has. Obviously, this is a big decision to make. Not only will it look for things that we suspect, but it will find things we might not want to know about. Like whether he has a higher likelihood of cancer or dementia. It raises a lot of ethical questions about how much you need to know about his future and when you've gone too far. Would you want to know your future in that sense? It's a hard question to wrap your mind around.

In other news, little man will be getting a buzz cut tonight! (Pictures to follow later this evening ) I hate to cut it before it gets cold, but he will be getting an EEG on Monday and that means about 25 sticky electrodes all over his head.  I figure rather be safe than sorry!  Hopefully he doesn't mind too bad and we do love the cute hats that come with the cold weather!

Thanks for stopping by, I'll update everyone again next week after our big trip to University of Iowa!

A fun couple weeks

Hey everyone, thanks for checking in! I'm posting some quick little man updates since it's been a few weeks. There seems to always be an endless supply of news as little man makes progress constantly! :)

As a lot of you saw on Facebook last week, Jameson got his hearing aid! We're only using it a few hours a day to start, usually just during play time....but so far he seems to like it. It definitely isn't an overnight change as far as obvious communication changes, but it's a tool towards getting there. We can only continue to try new things to help him and let let him show us how he wants to use it. As you all know, he writes his own story.

Last week also brought some fun new therapy for little man. His therapy team did some exercises to recognize his likes and dislikes. Anything from different smells to varying textures in his hands. We'll get a full report on the information once they're done but he did make some obvious preferences. As far as smell goes, little man likes cinnamon, baby lotion and honey lotion. But he isn't a fan of vicks vapo rub or vanilla!  Interesting!  :)

I had to include the above picture that I took yesterday because I caught him in a moment of sitting without support!  Even if it was only for a few seconds before he realized it and then fell backwards into my arms...it was still an amazing moment to catch on film.

Thanks for stopping by and reading our updates. I'll update again after we see our genetics team at the end of the week. :)

Neuros and Uros and Nephros...oh my!

Well we survived! 5 appointments in one day is a lot but we made it through and even though the day was long it was well worth it. There is still many follow up tests that need to be done but at least we have a road map now of where we're going. 

So where to begin? I would say there were three major issues we hoped to get some answers to during our trip to the University of Iowa. All of those concerns were addressed and we're working on finding solutions or at least some forms of treatment. The easiest one to explain first is that little man's light sensitivity issues were discussed with Opthamology and we're moving forward with specialized glasses that will help block out certain UVA/UVB rays and hopefully get us closer to be able to take him out into the natural light. Since he lacks complete head control, we'll be putting him in glasses that look sort of like swimmer goggles. Might be funny to look at but to be able to take him outside and just hang out in the sunshine would be something he's never experienced before. Can you imagine your whole life being stuck inside four walls...and then all of a sudden the world opens up? I'm beyond excited to see if this can work for him and what new things he can discover. 

Our next major issue that we're working on is with Neurology. Jameson will be going back to U of I at the end of October for an EEG. This test measures electrical activity in the brain and tests for seizures. We've noticed for quite a long time that little man has occasional twitching episodes. Sometimes they happen in clusters and sometimes they're only very brief eye twitches. So subtle that most people don't even notice he's doing it. Since his MRI this summer showed some issues with his brain, we're now more aware that these problems could be causing the twitches. The way our neurologist explained it is that the brain likes to be very uniform and perfect. When there is any sort of problem in its development, it likes to do things like cause  problems with how your body moves and works. It also makes it so that you have problems with controlling the way your body moves (seizures or movement disorders) and how it rests. (sleep problems ) As we continue to learn more about this and work with our neuro team, we'll get more and more answers that can hopefully help little man.

The last major thing we discussed with our doctors was Jameson's bladder and kidney issues. We had an ultrasound done that showed grade 2 hydronephrosis and inflammation of the kidneys. What our Urologist believes is that Jameson has something called a neurogenic bladder. I'm sure WebMD can give much better information than me, but the basics of it are that the bladder is controlled by many nerves and muscles that are in turn controlled by the brain. When the brain is somehow damaged or not working correctly, it causes the bladder to not understand when it needs to empty based on how full it is. So when the bladder gets very full but the brain doesnt know that it should be emptying it, that causes excess pressure to back up into the kidneys and cause them to become inflamed and possibly damaged if that continues for a long period of time. As of now, Jameson is swelling only mildly into his kidneys but without treatment it will get worse. Our doctors still need to run more tests to determine the exact causes but it is something we're actively working on trying to help him with. Whether that means more surgery....or whether he needs to be catheterized....or whether he can simply go on daily antibiotics, we don't have the answer to that yet. But his doctors are amazing and always trying to give him the best of what's out there for treatments. 

I know this was just a ton of information, but I'm happy to keep everyone updated on how awesome our little man is. He continues to amaze doctors and researchers with how much strength he possesses. If anyone ever has questions, thoughts, prayers...feel free to pass them on to us as we continue to love all the support and share Jameson's journey!

Oh Happy Day!

Happy to write a blog post completely dedicated to everything good in little man's world.  These posts can get so full of medical jargon and surgeries and specialists that some of the more day to day happenings can fall through the cracks. So this blog is dedicated completely to the awesomeness that is Jameson!

We've now been incorporating baby food into 4 of Jameson's feeds every day. So far, he's had:
● Avocado
● Pears
● Cinnamon
● Pineapple
● Banana
● Carrots
● Apples
● Kiwi
● Pumpkin
● Sweet Potatoes
● Blueberries
 It feels sooooo good feeding him all these natural foods and having him tolerate them. The more and more we can get him tolerating,  the closer we get to cutting out formula completely from his diet! :)

In other news, we've added another Physical Therapist to his week of activities. So now he is seeing 3 PTs, 1 OT, 1 ST, a hearing therapist and a chiropractor on a rotating basis every 2 weeks! Busy busy boy! We're seeing a lot of improvement in sitting, rolling and head control so all this work really makes a difference.

We are visiting the U of Iowa again on 9/22 for a full day of appointments. We'll be seeing Opthamology, Nephrology, Neurology and Urology. It's great that they were able to work everything into one day for us and we look forward to getting a lot more information from these doctors.

Hope everyone is enjoying the end of their summer and we’ll continue to keep you all up to date on everything little dude! :)

Dog days of Summer

Happy Friday all! I'm writing a quick blog post on my lunch hour while I have a little time.  Here's some little man updates for everyone:

Jameson has been fitted for his hearing aid, we should be getting it in a couple weeks. We also meet with his new hearing teacher next Thursday.  She'll be working with him on ways to help him communicate and tell us what he wants/likes/etc. It will be a fun process letting him slowly learn how to express himself,  I'll make sure to take a video of the first time he gets his hearing aid on.  :) 

I've now sent little man's MRI scans to doctors in Philadelphia and Seattle that are working with us on hopefully a diagnosis. We met with neurosurgery this week and thankfully he agreed to no surgery for the time being. The main issue is that little man's brain has more spinal fluid within and around it than what should be there.  How they resolve this is to place a shunt that drains the fluid from the brain down into the abdomen where it's re-absorbed into the body. The question remains, is the excess fluid in his brain doing any harm or is it just there? We'll be getting another MRI in 6 months to see if the fluid is increasing or staying the same, and whether we can continue to simply monitor it. Either way, when a doctor says "no surgery", you say thank God and keep hoping for the same!  

By the way, little man is sooooo close to sitting on his own. The head control is getting much better. He is sleeping quite consistently now and we're very close to weaning him off his sleep medication! I'm researching a lot about blended diets and how amazingly kiddos can progress once they've started getting those natural foods like fruit, veggies, protein, etc. I'm excited to get started and see where we go from here!! 

Thanks everyone for stopping by and checking in on little man's progress, we'll keep you all updated as we continue our medical adventures!  :)

I still would have chosen you...

I Still Would Have Chosen You

 "If before you were born, I could have gone to heaven and saw all the beautiful souls, I still would have chosen you... 

 If God had told me, "This soul would one day need extra care and needs," I still would have chosen you...

 If He had told me, "This soul may make your heart bleed," I still would have chosen you...

 If He had told me, "This soul would make you question the depth of your faith," I still would have chosen you...

 If He had told me "This soul would make tears flow from your eyes that could fill a river," I still would have chosen you...

  If He had told me "This soul may one day make you witness overbearing suffering,"I still would have chosen you...

 If He had told me, "All that you know to be normal would drastically change," I still would have chosen you...

  Of course, even though I would have chosen you, I know it was God who chose me for you."

More adventure is on the horizon

Wanted to give everyone some quick updates on Jameson and whats been going on.

First and foremost, little man should now be dubbed little rockstar because he has been kicking some post-op butt! No issues at all with the healing of his incisions and he doesn't act like he's been in any pain at all. Its absolutely AMAZING how tough kids are, they are so resilient.

We met with Jameson's ENT, Dr. Young, this week and we're moving forward with the hearing aid in the left ear. We will give it a 6 month trial run and if it doesn't work for him then we'll sit down and talk about our options. Those options include anything from a Cochlear implant to not trying anything at all. We still have a lot of unanswered questions regarding Jameson's brain development that could be affecting the inner ear so still more to come on all of this.

The MRI results came back a couple weeks ago. I'm not going to lie and tell everyone it was all good news because then I would be doing a disservice to the reason I started this blog in the first place. This whole thing was a way to keep people that love him informed and to use this as an outlet to help deal with everything we have going on.  To be completely honest, the last couple weeks have been really rough. We found out about some issues with his kidneys that we had never known about before. I don't have a lot of information for everyone about it yet other than that they suspect kidney reflux. We've been referred to a nephrologist and urologist at the University of Iowa so once we get some tests done we'll have a better idea of whether this will mean more surgery or whether we can attempt to treat it other ways. Obviously, more to come on this as well.

Jameson's MRI also showed some issues with the brain that we have very little information on yet. I cannot explain enough how incredibly rare he is and therefore to find doctors that have dealt with these kinds of issues are difficult. We're part of a support group on Facebook for CdLS and I just today got in touch with another mom whose son also has similar brain abnormalities to Jameson. She informed me of a research study of 8 known children thats being done with doctors at Boston Children's Hospital and the Children's National Medical Center in DC. I'm in the process of getting a copy of Jameson's MRI results to these doctors to see if they can get us any more information. We appreciate more than anything everyones continued prayers that we can find the right doctors to properly diagnose and help us treat whatever curve balls we get thrown with our little man. He is so incredibly strong, I sometimes feel like I'm just trying to keep up with him. :)

Also, I just want to end things by pointing out how awesome Jameson has been with physical therapy the last month or two. He is now completely rolling from back to stomach and back again with no assistance. He still needs some help with sitting but he's getting closer and closer! I was nervous that his surgery might stall his progress a little but he seems to have trudged right through.

As I said before, I'll continue to update the blog with whatever information I can. We definitely have another full year of medical adventures coming our way! Thanks for thinking of us.

Little Superman

Hello everyone!

We are happily 4 days post-op and doing great. Jameson has once again proven that he is stronger than we even imagined. He was able to get off the breathing machine within a few hours of being transferred to intensive care and from there has just gotten better and better. Today, he is really back to himself, only on Tylenol and wanting to move and roll all over the place! Its amazing how quick they can bounce back!

The surgery itself was somewhat complicated. Our surgeon, Dr. Irish, who has worked with Jameson since he was a month old, declared to me upon finishing that this was the most difficult Orchiopexy he had ever done. While the amazement of Jameson's complexities are something to marvel at, it is still hard that things can't seem to just go easy for him. The surgery's goal was to move both undescended testicles from the abdomen into the scrotum. Unfortunately, Dr Irish was only able to work with the right testicle and he had to completely cut off the blood supply in order to stretch it to where it needed to be. The decision was made to not attempt the left one at this time just in case the right doesn't get adequate new blood flow and has to be removed. We will keep our fingers crossed that this won't require more surgery in the future but more than likely it will and we will take it one step at a time. 

Along with little man's surgery he also had an ABR and an MRI. The MRI results we are still waiting on but the ABR we were able to get information on right away. Jameson has about 50% hearing in his left ear and no response in his right ear. We were definitely expecting something like this so it wasn't much of a shock. Now that we finally have these results we can move forward with a hearing aid in his left ear and that should help significantly. Our local early access agency, who provides some of his physical and occupational therapy, will also be providing a hearing teacher for him that will work on signing and communication. It will be challenging to add another weekly appointment but completely worth it. We are excited and grateful to all the help that Jameson receives through local agencies, they are amazing people that really care about special needs children and families. 

I hate to sound like a broken record, but I want to say thank you again to everyone for their continued love and support of our family's journey. The kind words and prayers we received while in the hospital were incredibly uplifting and got us through the tough times. Being able to use this blog as an outlet to communicate what we're going through is extremely helpful and healing....so I thank you all again for the support.  :)

Surgery Updates

Happy Saturday everyone! As I listen to the rain falling outside and little man snores next to me during his morning nap,  I figure no better time than to update everyone on Jameson's recent doctors visits and surgery updates.

After much discussion between different departments and doctors, our medical team has finally decided the best course of action for little man is to do all his procedures in one day. We were getting information back and forth for a few weeks about whether it would be safe for him to be under anesthesia for the amount of time needed to do his surgery, the three hour MRI, and the one hour ABR. The final decision was that it was worth it to try as opposed to having him be under sedation on multiple occasions during the summer. We are happy that they are willing to work with him and give him the best care possible for such a high risk case. We truly appreciate everyones prayers as we prepare for the day on July 2nd. It will be difficult but hopefully the last surgery he will need for quite some time. :)

Saw an amazing new doctor this Friday named Dr. Fred Klingbeil. He is a physiatrist who deals with pediatric rehabilitation medicine. Gave us a lot of great information and advice in regards to getting Jameson to the best specialists and thinking about things for the future. We look forward to adding him to our list of doctors and working with him throughout little man's life.

No other major updates to report right now, we're really just trying to keep our little guy as healthy as possible so that our surgery isn't cancelled. He's been sleeping great these days and hasn't had an ear infection since April!! Thankful for his continued progress in his many therapies and thankful for the love and support of everyone around us.

One tough cookie

 Well, here we are! We've made it past the one year mark and still going strong. If I could imagine what little man is thinking it would be something like..."throw whatever you want at me,  im the toughest little dude you're going to meet and nothing scares me!"  :)

We have gone through A LOT in the last month. Its been an emotional rollercoaster and the ride hasn't finished yet but we're making it through with a good attitude. What else can you do? Obviously, no one wishes anything difficult on their child but you have to make due with the cards that are dealt and stay as positive as you can. So here goes while I try to explain all the information we've gathered recently and where we're headed.

First off, we're in the process of figuring out what is going on with Jameson's spine. This all started when his chiropractor mentioned to us that she noticed one ribcage sticking out slightly more than the other. We then mentioned it to his physical therapist and then to Jameson's pediatrician. After his 12 month check up, we went to get chest xrays and instantly got the results back that our doctor believed Jameson had scoliosis. As you can see from his xray, there is a slight curve in the middle. We were automatically referred to Dr Weinstein at U of Iowa because he was supposed to be the best in the state. On top of the spine issue, you can also see in the xray that Jameson's right diaphragm is elevated into his lungs. This was something we knew about as he was born with it, but now we wondered if it was causing the spine to curve.

So yesterday the 21st, we went and had our meeting with Dr. Weinstein in Iowa City. We were told that he doesn't believe Jameson has scoliosis at this point in time but to check every 6 months-1 year. The news was bittersweet. We are extremely happy that this orthopedic surgeon with many years of experience is saying its not scoliosis but we've also heard a lot of stories from other parents of children with scoli that they were told to "wait and see" what happens only to find a year later that the spinal curve is MUCH worse and more difficult to treat. As of now, we are hopeful that this doctor is right and we have nothing to worry about, but we are still going to consider what his future MRI reads and decide from there whether we need another opinion.

We also saw little man's general surgeon Dr Irish today and are on the way to getting his surgery scheduled. We have a lot of different procedures that need to be done simultaneously so coordinating multiple people is the hardest part. Luckily, we have an awesome team of doctors that are adamant Jameson's gets the best care possible. He gets to have the best pediatric surgeon, anesthesiologist, and otolaryngologist in Des Moines!!!   The main part of his surgery will be to find his testicles (which are somewhere in the abdomen) and attach them where they're supposed to be. On top of that he needs a full brain/body MRI and a sedated hearing test. He will also be getting a new feeding tube installed while under. So lots of things to accomplish but luckily we have a great team looking out for him and helping us along the way.

I know this is tons of information, maybe even more than most people want to read but its our lives. We live, breath, eat and sleep medical research 24/7. It seems to be what comes with the territory of having a child with special needs and we're ok with that. As long as we continue to get the best information and help for little man thats all that matters. Thank for keeping him in your prayers and we'll keep everyone updated as we go along!!

April Updates

Hello again everyone!

I had some time tonight to update the blog with new photos as we're closely approaching the big day. Jameson will be a year old on May 3rd!!! Its hard to believe a little 5 lb munchkin has blossomed into the little man we know and love today but here he is all 15 lbs 6 oz at the doctors office today! Still wearing his size 2 diapers and working hard in therapy almost every day of the week. :)

Just some quick updates for everybody who is following our story. Sleeping has been amazingly improved since our last post. He's been on hydroxyzine since March and it seems to finally be working along with the clearing up of his most recent ear infection. We are soooooo glad for this, not only for the obvious reason of getting more sleep but because the next type of med they wanted to put him on was a heavily addictive sedative and we weren't comfortable with that at all. Its amazing how after 3 months of not sleeping all of a sudden he's back to a semi-normal schedule. AMAZING!

Jameson was also fitted for a new helmet last week which we should be getting from the orthotist soon. We are happy to report that his doctor advises we have much more time to work with the helmet than a typically developing child due to Jameson's slow rate of growth. Anything to avoid surgery is a plus in our book!

We also received word this week from the U of Iowa that little man's genetic bloodwork came back negative for the SMC1a gene mutation. This is the second most common gene mutation for people with CDLS, after the NIPBL mutation. This basically means that Jameson is still a medical anomaly in that they haven't located which specific mutation he has thats caused him to have this disorder. The amazing thing is that he could very well have a mutation that hasn't yet been discovered or maybe just a handful of people in the world might have. Crazy how science and the human body work.

Thank you all again for checking in with us and keep praying for Jameson's continued progress in therapy and with his doctors and specialists.  :)

Thankful

As we come closer to Jameson's one year birthday, it's fun to look back and see the progress he's made. While some days can be hard, we find that every day there is something to be thankful for.

Grandma Gina and I were just talking earlier today about how much little man has changed since last May. When our nurse came to weigh him today, he had finally hit the 15 lb mark! What a celebration for all of us! We reflected back on when we had difficulty getting him to the 6, 7, and 10 lb marks. Sitting in the hospital for two months with a feeding tube down his nose and throwing up every day...he could barely gain an ounce. And to look at him now is just amazing. Such a happy little soldier. No matter what nature seems to throw at him he has an attitude that is to be admired.

One of Jameson's physical therapists said to me this week something that really struck a chord. It's not worth it to look at the future and put yourself into the dark places in your mind. We may not know how far Jameson can go or what our time will necessarily look like...but you can live each day to its fullest and be thankful for everything you have. And what we have is an amazing gift.

Love to you all :)

Glass half full

I've been purposely waiting to post something lately....

It can be difficult when you feel like there is nothing positive to say...but I've come to the realization that when you're in a situation like ours it's going to be a roller coaster ride. Lots of high highs and low lows. This blog is meant to be a way to share Jameson's journey and feel the support of everyone who loves him. So I'm going to keep doing that.

We've had a rough couple months with Jameson sleeping. When we first got out of the hospital, he slept fantastic! 10-12 hours at night and quite a few naps during the day. Since the beginning of the year though, it's been a battle. At first we had to rule out the normal things; constipation, hunger, sickness, a phase, etc. After almost 2 months, we realized something wasn't right. It was getting to the point where he might sleep 8 hours total in a 24 hour period...naps and overnight. This just wasn't enough sleep for his brain to develop and to do the 4-5 different therapies and numerous appointments. We got to the point where his pediatrician said we needed to try medication. This was an extremely difficult decision, as the thought of having to put him on meds just to sleep sounded horrible...but the alternative was him not being able to give his body and mind rest and therefore put him further behind than he already is. Since we started, we've tried a few different types of meds and are on one right now that seems to help although his sleep is still a major struggle. This had definitely been the most challenging thing we've dealt with lately. I pray to God every night to help him sleep so he can continue to grow and get stronger.

Another major issue has been his helmet. After he developed a major infection on his scalp we had to leave the helmet off for well over a month. After getting the ok to put it back on it didn't even take a week for the wound to partially open again due to the skin being so thin and damaged in that area. Our orthotics doctor is continually working with us on trying different things but it's a challenge. I think Jameson might be one of the most difficult cases he's had so that slightly amuses me when we get to stump doctors and specialists. :)

Probably the biggest blow we felt this last month was when Jameson failed his 4th hearing test. He hadn't had one since October and we felt his hearing had gotten so much better since then so for him not to be able to pass it again was rough. While the idea of hearing aids or a cochlear implant don't scare me, it's more the thought of him having to get through one more challenge that's hard. Sometimes you just throw your hands up and say, geez doesn't he have enough already? But then you have to remember there are so many things still that we can be thankful for. Glass half full.

While it's definitely been a rough few months we are still happy and blessed every single day. Jameson has been making great progress in therapy he is getting ever closer to that head control he wants so badly. While he still can't completely roll, he's finding his own ways to move around on the floor. It's pretty amazing to watch him get enjoyment out of toys and people, something he didn't have even a couple months ago. We are so grateful still for everyone's love and support and we'll continue to keep you all updated through the highs and lows.

February updates

Hi everyone! Sorry it's been so long since our last update...where does the time go?! We've been our usual busy selves with little man. Physical therapy twice a week, chiropractor on Mondays, and of course all his doctors and specialists want follow ups, so we never seem to really slow down! :)

Where to start.....well, we are now over 3 weeks since Jameson has been able to wear his cranial helmet. This is a huge bummer as that helmet is really time sensitive as far as how long it will work for him. We obviously want to avoid any sort of jaw or facial reconstructive surgery in the future so the helmet is a must. We started on a new antibiotic for the blister on his head on 2/7 and its already made a huge difference. It looks better in the last few days then the last few weeks so prayers that he can get his helmet back on next week.

We had our 9 month check up last week and were happy to get some updates from Jameson's primary doctor about what our next 6-12 months will look like. We are doing another hearing screening in March to see if little man's hearing has improved and where we should go with that. We have noticed his hearing seems to be getting better over the last few months so hoping we don't have to worry about hearing aids or a cochlear implant. Jameson also needs to have surgery by 18 months old to move his testicles out of his abdomen. Unfortunately, it can be quite common with genetic disorders for this to happen to babies and if they aren't moved out of the abdomen by 18 months then there is an 8x higher risk of testicular cancer. Along with surgery, we want to have his MRI done simultaneously so that he doesn't need to be under anesthesia twice.

We definitely have another big year full of medical adventures coming up for little man. While it can feel like we're always going at full speed it's worth it to see the small bits of progress he makes every day. We really do appreciate everyone's continued support and love for our little guy!

Loving life

It's been over two weeks now since I was let go from my job and I wouldn't say I'm missing it at all! Being able to stay home with Jameson every day and take him to his weekly therapies and doctors appointments has been amazing. I know I will have to go back to the real world eventually but I'm definitely in no hurry! ;)

In other little man news, Jameson weighed in at 13 lbs 11 oz yesterday! That's on top of fighting an ear infection, going on pedialyte for a week when he had a bad cold, and dealing with helmet sores. We even introduced some baby foods to him, just a small amount in each check a couple times a day. He's done very well so far, doesn't show much interest in it yet but at least he isn't spitting it out or choking on it so that's good in our book. We also met an amazing family yesterday through Jameson's speech therapist. They have a 3 year old son named Sullivan who also has some medical challenges but is an extremely happy and thriving little boy. He is still working on communicating verbally and standing on his own but he is an awesome little dude! It's definitely my goal this year to seek out more families like this and continue to both learn and share our own stories.

Hope everyone is well and staying warm in this cold weather :)

Staying focused

Hi everyone! I'm writing some updates for everyone while little man snores next to me in bed. :)

As most of you may have heard, I was let go from Wells Fargo on 1/6 after 4 years. I'm not much of a confrontational type of personality but I'll say that if a company you've given so much to can't be understanding of your child's medical issues then it's not a company I would want to work for anymore. Over the last 8 months, our family has been thrown a curveball...and I wouldn't give up any of the doctors appointments or time I've spent with Jameson in the hospital for anything. Especially not a job that doesn't understand, life is much more important than that.

In other news, Jameson has been doing AMAZING with his helmet! Last night he actually slept in it the majority of the night...I've attached a photo below of what he looked like next to me when I woke up this morning. I'm so amazed at how he continually surprises us. The only issue we're having with it is him getting very sweaty and a little stinky head. HA! Oh well, just means more warm baths for little man which he loves. :)

We also had our first chiropractic appointment today. I was very nervous about it but he did really good. His chiropractor said his spine and hips seem symmetrical which was great news for us. She also said she was surprised with how strong he was, after hearing about his medical issues she thought he'd be very weak but he really has quite a little personality. It really feels nice to hear that from someone just meeting him for the first time, especially when you feel like he's not making as much progress as we'd like.

Thanks for stopping by and checking in on us, we appreciate your continued support and love!

A crazy week

The helmet has officially come home with us and Jameson is doing well. We are going back to the prosthetics company this week for some corrections with the fit but for the most part we're doing good. I'm amazed and proud of how well Jameson is already adjusting, especially with being sick. Thankfully, he's been on antibiotics for a week now and is feeling much better.

Don't have many other updates right now, no new doctors scheduled yet for the month but that always seems to change at a moment's notice. We will have our second speech therapy appointment next week and possibly start introducing some spoon feeding if he'll take it...we'll just have to see and leave it in God's hands. :)