Winter Blues

While I do love the holiday season, its also the most stressful part of the year. I enjoy spending Christmas and New Years with friends and family but along with it comes the woes of winter illnesses. Any parent hates this time of year because of all the colds and viruses running rampant through schools, church, and nearly any public place. But for parents of kids with medical issues, its even more difficult than you can imagine.


The common cold can hit people in many different ways....usually a low grade fever and maybe some coughing and congestion. For kids that have respiratory problems already, a common cold hits them like a freight train and then compounds over time to cause permanent damage. Jameson has a chronic respiratory condition called Bronchiectasis. This is where his lungs have become inflamed and damaged over time due to so many upper respiratory infections (colds) during his lifetime. Each time he gets a cold, it causes a little more scarring and damage that isn't reversible. There's no cure and no treatment. The only way to help slow down the progress of something like this is to keep him away from sick people as much as possible.

This winter season has just begun but little man is already on his third illness. I had a lengthy conversation with his pulmonologist about this and the decision was made to pull him out of preschool for the time being. I'm sad about this because Jameson has had a great time socializing and being at preschool for the last few months. But I'm also on the same page with the doctors that we need to get these illnesses under control before we can think about school again. So he will start a new round of antibiotics today and have the rest of the winter to cuddle up at home and hopefully stay healthy.


While I don't like the idea of him being in a bubble, we also have to know when things are worth the risk and when they're not. That's just the life we live. I want Jameson healthy and happy for as long as God allows him to be with us, so if having to stay home for the foreseeable future gets us there then I'll take it. We can make any situation work and still manage to have fun adventures and check things off the bucket list even in winter! Thanks everyone as always for your love and support. :-)

Preschool and a lesson

It's been nearly two weeks since Jameson started preschool and he has continued to amaze me at how well he's doing. Just this summer we spent a month in the hospital recovering from surgery and dealing with his ongoing battle with sleep apnea. Now I look at him going to school and it's something I never imagined in my wildest dreams. Today we actually let him be there by himself without me or grandma standing in the hallway in case an emergency happened. I'm just flabbergasted at how easy the transition has been for him.

I've learned quite a lesson during this experience of allowing him to go to school and spread his wings....I constantly underestimate him. It's not something I do intentionally. I think after all the hospital stays and sleepless nights of oxygen and feeding pumps, I just couldn't imagine a time when this would be possible. I thought it will be far too much for him; he will be over-stimulated and overwhelmed. And yet, I seem to be the only one overwhelmed. Overwhelmed with the feeling that I think a lot of other typical parents have, does my child still need me the same way he used to? Of course he does in a sense, but dropping him off at school and watching him light up to see the other kids and teachers shows me that his world has now expanded beyond our living room. Beyond the house he's known his whole life and the people who've always been there. His eyes have opened up to a whole new universe out there. And he deserves it.

The Mayo Clinic

Sorry it's been so long since my last blog post! I try to keep everyone well informed on Facebook but this is a nice way to summarize and wrap up what a roller coaster ride it was at Mayo. What started as a week with the Aerodigestive Clinic seeing doctors and running tests ended up being a month in the hospital with a major surgery and lots of hard decisions. I'm glad we're finally home but it was definitely one of the hardest hospital stays we've had  and I'm still struggling with everything we learned.  

The big reason we ended up in the hospital is Jameson has something called complex sleep apnea.. This is a combination of both obstructive and central apneas; obstructive being caused by structures in his airway that relax and obstruct his breathing, and central apnea being when the brain actually stops telling you to breath. The part of the brain that controls unconscious functions like breathing, heart rate and temperature is an area that Jameson never fully developed due to his genetic disorder. So because of that he tends to hold his breath when he's sleeping and that's what causes him to desat. These desats are when the amount of oxygen in his blood goes down to a dangerous level. A normal healthy person will probably have a blood oxygen level of between 95-100 throughout the day and night. When Jameson desats, he drops down to the 60s, 70s or 80s and his sleep study told us he was doing that 50-100 times an hour depending on how deep he was sleeping. Because of that, we opted to do the airway surgery to help with his obstructive apnea and at least tackle half the battle. The surgery included removing his tonsils and adenoids, shaving down his trachea and epiglottis, removing part of the turbinates in his nose and doing Botox injections in his salivary glands. It was a tough and extensive surgery but Jameson did amazingly well. The pain ended up being a non issue it was dealing with the central apnea and lungs that ended up being the reason for our long stay. 

As of today, we are still struggling with the right things to do for him. We've got him set up on a BiPAP machine now that he is supposed to wear at night and during naps. We have found this to be one of the most difficult aspects of the journey. He doesn't want to wear it (understandable) and I can't explain to him why he needs it. When I try to keep the BiPAP on all night he doesn't sleep well and that in turn causes more seizure from lack of sleep. But without the support he is still desating all night. So for now we are still in limbo on what to do and how to proceed. The doctors and palliative care team at Mayo talked to us a lot about regression and decline while we were there and what that could mean for him. I haven't fully accepted that yet and I still don't know how to wrap my mind around it honestly. I've asked them, how will I know when I'm pushing him too hard? And there's never a right or easy answer for that. I think we will just know. 

I hate for this blog to sound sad and depressing because that is not Jameson's life to me. I try my best to make his life only about love and happiness and smiles. I will continue to strive towards doing that as we go through these battles. Today may feel dark but tomorrow could be a beautiful sunny day and I try to cherish every one of those happy days. 😊

Birthdays and big trips

This is probably the longest I've gone between blog posts...almost two months! I think I do a good job of keeping everyone up-to-date with pictures and status updates on Facebook, but its always nice to sit down a write out a good review on how little man has been doing.


The biggest thing to happen recently in Jameson's world was an amazing trip to the Omaha zoo for his 3rd birthday! :)  While it can still be tricky with his light sensitivity to get him outside at a place like that, we all had a good time. He especially enjoyed the indoor monkey houses and the aquarium. This is our second zoo trip in his life and we always make a point to get a stuffed animal of whatever he seemed to have the most reaction to. Last time it was the red pandas and this time it was the chimpanzees. :)


The other big thing going on in our lives right now is preparing for our upcoming trip to the Mayo Clinic. Its going to be a VERY busy week with some long days but my hope is that we can just transition all of his care here and really finally feel like we have a team of doctors that are communicating with each other about how to give Jameson the best life possible. Our first trip will include appointments with Pulmonology, GI, ENT, Neurology, Neurosurgery, Urology and Genetics. He will have another EEG, sleep study, swallow study, chest CT, upper endoscopy and a 24 hour PH probe testing for silent reflux.


The second trip won't be until probably closer to the fall and that will include Nephrology, Endocrinology, Ophthalmology, Physical Medicine, and therapies. Plus whatever follow ups from the first set of appointments. While it feels like a lot, it will be worth it to get into the Mayo Clinic system and have every single one of his doctors in one place talking about Jameson and how each of their departments can work together.


Thank again for stopping by and checking in on little man. I will plan to update everyone in a few weeks once we've been to Mayo and share what our experience was like.

It's the little things

One of the most difficult things to overcome in life is comparing yourself to others. I find myself often comparing Jameson to other kids. Typical kids. Special needs kids. Kids with epilepsy, etc. Its like I'm always trying to find where he fits in some way or another. Over time, I've realized he doesn't really fit anywhere. He's like a special sauce; with some ingredients you recognize and some that are a secret to only his maker up in heaven.


So when he makes little accomplishments in life, they are extra special to me. It can take such a long period of time for him to do things but once he does, they are so incredibly amazing to watch. One example that really sticks out in my mind is his smile and laugh. I don't think little man purposely smiled until well after his 1st birthday. It took even longer to get him to laugh, and when he first started doing these things it would be a rare occurrence. I can happily say that now at almost 3 years old, Jameson smiles and laughs every single day. He talks all day long! (Well, his version of talking which is more like a bellow) :-)   He watches you smile and smiles back! If you had told me this 2 1/2 years ago I would've thought, wow that's all he's doing at 3 years old? But experiencing it completely changes your outlook.


Another thing that has made me a proud mom lately is his working towards sitting. Its been coming along very slowly over the years with weekly physical therapy, but he wants to do it and is trying. I couldn't be more grateful to the fact that he always tries so hard to do these things that his body just doesn't allow him to do very easily. He could just stop trying after 3 years of not getting it, but he wants to hold his head up and sit. He wants to move his legs and hopefully walk someday. He's an amazing little man!


To say I'm proud would probably be the understatement of the year. My heart is full of love and awe for everything he does and every little thing he accomplishes. It's easy for all of us to compare ourselves to others because its just a part of our human nature. Just make sure you take that extra time to appreciate the small things that make each of us special.

Transitions

Hi everyone!


I apologize for it being over a month since my last blog post! I try my best to update little things on Facebook and post lots of pictures but I know many people are interested in Jameson's overall health and what's coming up for him. I believe in my last blog update, I mentioned the tethered cord surgery and how that is on the list of possible things to do coming up this year. After much thought and discussion, we've decided to make a trip to the Mayo Clinic in Rochester for an overall health assessment and second opinion on the tethered cord surgery. Currently, Jameson has about 10 different specialists that he sees along with his regular doctors. The plan is to stay in Rochester for a week and see all the different departments along with whatever tests they need to make decisions on what the best treatments are. After that stay, we will have a meeting and discuss if there is anything else we should be doing or any changes to his current medications/therapies. We are very excited to get into the Mayo system not only for the amazing team of doctors they have there but for all the clinical trials and research studies they have at their disposal. It's something I've been thinking about doing for a while and the timing just seemed right.


Speaking of transitions, we had a big meeting a couple weeks ago with the school system therapists and case managers regarding Jameson starting preschool in the fall. It seems so crazy that this little peanut will actually be ready to go to a school 4 days a week but its here and we're finally wrapping our minds around the idea. The program is only for 2 1/2 hours a day, but its still very scary to us! This little man hasn't been out of our sight since he was born, so the thought of trusting someone else enough to care for him the way we do is difficult but needed. I have heard from many other special needs moms that the growth they've seen in their kids once they've gone to school and interacted with others is just amazing. We're very excited to see what this new chapter of Jameson's life will do for his development and overall happiness.


As always, thanks for stopping by and checking to see the latest on everything little man. We appreciate all the love and support that our family has received in these last 2 1/2 years and continues to receive daily. Love to you all!

A busy month

Welcome back and thanks for checking in! The fast-moving train that is Jameson's world of doctors and appointments has continued to move full steam ahead through the beginning of 2016. We enjoyed a little break over the holidays and now we're back to the craziness!


Through the first 4 weeks of the year Jameson has seen nephrology, endocrinology, neurology and neurosurgery. He will be seeing orthopedics and ENT in a couple weeks! It sure is busy but we're so used to it by now that we wouldn't know any different. :-) Little man had a bunch of lab work done to check his kidney function and hormones. His kidney levels came back slightly elevated from a few months ago, but his nephrologist was still very happy with his progress and overall health. His kidney disease will always be there but its something we can always work on managing. It is by no means a reason to be depressed or down, its only another example of how incredibly resilient he is.




Along with the kidney levels, we also found that Jameson has an underactive thyroid that we are now treating with medicine. Since we started this new thyroid medicine, his sleep has gotten much better than it was a couple months ago. It must be his body telling us he's happy about the new treatments!




Last but not least, we had quite a roller coaster of a trip to Minnesota last week. We were able to check many things off of little man's bucket list; riding a carousel, petting a stingray and visiting an aquarium! We also got news from his neurosurgeon that he thinks Jameson needs to have surgery on his spine this year. At first I was really taken aback. I wasn't prepared to hear that and I didn't know how to feel about it. But after taking a few days to let it settle in and talking to his doctors, it became apparent that surgery was the right thing to do.


The surgery they want to do is called a tethered spinal cord release. They believe that part of Jameson's spinal cord is attached to tissue at the bottom on the canal and therefore being pulled tight and causing nerve damage. Typically, an MRI will show this and that's how they diagnose the problem and decide on surgery. But in Jameson's case, his MRI doesn't show a tethered spinal cord. Instead he has all the classic symptoms, like weakness in his legs, issues with his bladder, constipation and scoliosis. The doctor wants to do the surgery to prevent any future damage that could happen and possibly cause chronic back and leg pain. If given the choice between a surgery and hospital stay versus irreversible damage that causes chronic pain, I don't think you have any other decision. When it comes to your child you will do everything you can to make them comfortable and give them the best quality of life possible.




So as always, we have a busy few months ahead of us! Jameson has been doing so well the last 6 months, its pretty amazing to see him learning new things every day. If I can be thankful to God for one thing above all, its for giving little man his sense of comfort in almost everything. He is pleased every single day with just being around his family and playing with his toys. It makes everything worth it when you see happiness in his eyes because he knows how loved he is. :-)