Jameson’s Journey has now moved to Jamesonsjourney.com
If you would still like to follow us please subscribe to our new page!
Jameson’s Journey has now moved to Jamesonsjourney.com
If you would still like to follow us please subscribe to our new page!
Life is such a roller-coaster ride. When Jameson came into our lives we knew there were going to be ups and downs. One of our top priorities is to make Jameson’s life as normal as possible, while doing everything we can to keep him healthy and growing. We have embraced every appointment, every procedure, every follow-up; and even more so have counted our blessings and enjoyed the calm. Although I know and understand what lies ahead, and all the what-ifs that may develop as we go, I get settled into our routine. I get used to our normal, and I forget that speed bumps lie ahead. Jameson’s last surgery was last March. Sure, he has medical appointments, he goes to speech and occupational therapy every week. But this past year has been so uneventful. I have happy boys running around my house, driving me crazy, getting into trouble; I have boys running around my house doing what all other boys do.
I embrace this and enjoy this more than anything, because even though it’s been pushed to the far back of my mind, I know there will always be what-ifs with Jameson. Today a what-if became and now-this.
We finally had our follow-up appointment for Jameson’s sleep study that he had in February (yeah, don’t even get me started on that one) earlier this week. I sent a copy of the report off to Dr. Fearon and heard back from him today. Jameson’s sleep study showed severe obstructive sleep apnea. We are not surprised at this. We knew it wasn’t going to be great. I had thought that the next step would be to have Jameson’s tonsils and adenoids removed. But, gears have changed and we need to get Jameson on a CPAP as soon as possible. Jameson averaged 47 apneas per hour and his oxygen saturation dropped to 50%. If by chance (and there is a good one) that Jameson won’t tolerate the CPAP, he will need a tracheostomy.
Now, I say there is good chance he won’t tolerate the CPAP because my Jameson is stubborn and resistant. But, we will do everything we can to give this a try. I am not opposed to the trache, and as my mother mentioned, it’s less invasive than removing his tonsils and adenoids, and leaves him with his immune system in tact. So, here we are.
All afternoon I have been processing my feelings. I feel like I have been snapped back to reality. We had a whole year to relax without worry, and in one fell swoop everything changes. Granted it could always be worse. But here we are, about to establish another new normal for our family.
I don’t even really know how to explain what I feel. From a medical perspective, I am completely fine with all of this. As a mother, I am fine with the CPAP, and I would be fine with a trache. I think what I am feeling has to do with how much Jameson is suffering and not knowing. He puts on a smile, giggles, still loves to play, and gets excited about silly things any three year old would. But when he lays down to sleep he is not getting rest; he is not getting nearly enough oxygen, his body – his brain is not thriving. Most adults would wake up cranky, irritated, and miserable. But Jameson, he wakes up and wants to snuggle, eat pancakes, and play outside. This completely tugs on my heart.
Now, I could also be more emotional than I usually would from how stressful my life has been — I am in school full-time (kind-of more than full-time) to become a Respiratory Therapist; ironically enough, lol.
Don’t get me wrong I am grateful for the medical care we have. We are fortunate that we don’t have to struggle with co-pays and out of pocket expenses. But, I am so mad we fought for six months to get his last sleep study scheduled, I am so mad we waited two months to get results for a sleep study that was so severe when Dr. Fearon read it he called me immediately. When I called the sleep clinic to get Jameson scheduled to come in and do what needs to be done to get on the CPAP they were closed for the day…
So, we will see what the process will be like to get Jameson situated. If anyone has a small little one on a CPAP I’d love to hear about your experience, how did they handle it, what kinds of tips/tricks you might have to make it more comfortable for him.
Until next time…hopefully not too long from now 😉
Today is Jameson’s third birthday, and I cannot believe how fast time passes! I also can’t believe that it hasn’t even been a year since his last surgery, it feels like forever ago. It is truly amazing the ability children have to bounce back and move on. I know that Jameson’s journey will shape the man he will become, but I love watching him embrace the fact that at heart he is simply a three year old little boy who loves life, his family, and his dog 🙂
This year will be a big year for Jameson. We have moved and settled into our new home in San Antonio; he has a lot of new people on his team now! And we are excited about what they have to offer him.
Today he started PreK-3! He goes from 7:30am-10:30am, and he will get speech therapy there twice a week (in addition to starting private speech therapy twice a week in the afternoons). He had a fantastic day! It was rough at first, he wasn’t too happy, but when we brought birthday cupcakes to his class at 10:00 his teachers said he warmed right up and was laughing and playing with the other boys and participated in the classroom activities!
Next week he will start occupational therapy once a week as well. Needless to say, he will be busy; we will be busy. It seems as though the first year of his life we were busy with doctor appointment after doctor appointment. Now, we are focusing our efforts on getting him up to speed with his peers as he transitions from toddler to boy. (Not that we weren’t before, he’s just at the point where we can do a little more without taking away ALL of his boyhood, we really believe the most important thing is for Jameson to be a child as much as possible, and too many appointments can take away from that). We also have an appointment with a developmental pediatrician next week, a sleep study on the 19th (FINALLY!!), and an appointment with audiology at the end of the month!
So, Happy Birthday little man!!! I can’t wait to see what you accomplish this year!
Jameson had his follow-up MRI last week. We had the MRI done close to home and sent his images up to Dallas for Dr. Fearon to review. This was Jameson’s third MRI, he had the first two in Dallas….the MRI went great, no issues with anesthesia, no side effects, but they wouldn’t let me hold him until he fell asleep 😦 In Dallas I was allowed to hold him until the anesthesia took effect. This time they made me wait at the door and “watch”. Ugh, that was horrible, watching him scream for me while they held the mask to his face. But, we made it through no worse for wear.
Anyway, on to the important part. Dr. Fearon said he is really please with this MRI comparing it to his pre-op MRI, and we are looking at maybe 18-24 months until his next MRI! Great news! He said his only concern is how much oxygen he’s getting, so we shall see what his sleep study shows. We (my husband and I) are fairly confident that it will not be great. Jameson has always snored, but lately it’s gone to a whole new level. I could tune it out before, but it is actually incredibly hard to sleep if he crawls in bed with us. Who knows, maybe he’ll surprise us. 😉
We’ve had some encounters recently that have inspired me to write this post. This is something I hope everyone reads and shares. This is a message that doesn’t just pertain to Jameson, but to all children who are made fun of and singled out for their differences; and I am pretty sure their parents feel the same way I do.
I want to begin by saying that I don’t hold anything against these children, or their parents. I understand that it can be extremely awkward when your child is the one making fun or being mean to another child. But, the next time this happens I hope these parents do more. Because although I cannot take offense, I would be lying if I said it didn’t hurt. It does. It hurts to see my child be made fun of, knowing that this will be a big part of his world the rest of his life.
By now you might be wondering what happened to prompt these words. Nothing has happened that hasn’t happened before; and sadly that won’t happen again. But, for some reason, it has just happened a lot in the last few weeks.
We recently moved to a new town, and our oldest is in 1st grade. The second week of school there was an open house to see the school and meet his teacher. The entire school, K-5th grade, was corralled in the cafeteria to listen to opening remarks and welcomes. As we were walking into the crowded cafeteria we were immediately greeted by a little boy who pointed at Jameson, nudged his mother, and said he looked funny. We paid no mind and continued to walk through the cafeteria looking for a spot to sit down. Shortly after we sat down two little girls and their mother sat across from us. One little girl looks at us, turned to her mother and said “He looks scary”, pointing to Jameson. Her mother told her that wasn’t nice to say, and turned around.
Last weekend, in the grocery store with my two boys, a mother and her son are walking down the aisle towards us. I see the little boy look up; I smile at him. He starts to laugh, and tells his mom, “Look mom, that baby looks funny”, laughing. I look at his mother and she cannot even muster a word, her jaw hanging open.
As a parent I have been in situations where my child has done or said something inappropriate, so I understand the embarrassment. I also understand that these children are not to blame. Think about, we teach them from birth to single things out. Put a bunch of red blocks together, sneak a green one in, and them tell them to look for the green one, the different one. Sort the shapes that only fit through the right hole. You’ll never fit a round peg in a square hole. The round one is wrong. It’s okay to notice differences. That’s how we identify one thing from another. We teach what is by teaching what isn’t. But these are objects. We can single them out and choose the right one, the one that fits in. We can’t do this to people; to children.
As a mother of a child who looks different this is my plea to you:
If you are the parent whose child says another child looks funny or scary, don’t simply say “That isn’t a nice thing to say”. While you are right, it’s not nice, simply saying that and walking away still isolates my child. The next time follow that statement up and tell your child, “I’m sure he’s a very nice boy, let’s go meet him”. Please, come introduce yourself and ask my child’s name. I assure you, we don’t bite! My child is just like yours, he can be sweet, loving, throw temper tantrums, and be a handful. And I assure you, I am just like you, I am a parent learning my way through this.
If your child is curious and doesn’t say anything mean but still notices he looks different; please, introduce yourself to us, ask us our names! Include my child in your world. I promise you, he’s not scary, he’s just a little boy.
To all the parents and children out there that already practice this, and to those that have purposely made a point to brighten Jameson’s day when we have crossed paths; Thank you. From the bottom of my heart, thank you. I can honestly tell you I can remember vividly each encounter where a stranger has made a conscious effort to want to know Jameson and include him in their world. And I can bet he does too. My six year old amazes me when I hear him recount a memory from when he was three years old, so I am sure Jameson remembers the same.
I mean seriously, how mean does this happy face covered in S’mores look?! 😉
First, let me back track:
At Jameson’s post-op appointment last year (Feb 2013) Dr. Fearon was very pleased with the surgery and Jameson’s recovery. His instructions were to let Jameson just be a toddler, do a 6 month follow up sleep study and a 1 year follow up MRI and visit with him. Everything else along the way we could do here at home, ENT, eyes, audiology…
So, that’s what we did. Jameson visits his ophthalmologist every 4 months to check for corneal dryness and optic pressure; so far so good! ENT, well, you all know by now Jameson has mild to moderate hearing loss. He got his hearing aids mid-December. The first two weeks were amazing! He didn’t try to take them out, and we all noticed he was a lot more verbal. We were regularly visiting his audiologist to make sure the settings were where they needed to be. Then all of a sudden Jameson started pulling his hearing aids out. This was so disappointing because he started off so good. Then we noticed that when they were in he would grab at his ears, like he was holding them. Initially we thought maybe it’s too loud. At our follow up appointment that week I told his audiologist everything that was going on. She checked his ears and couldn’t get a reading and sent us to ENT. That’s when we learned that both of Jameson’s tubes were now out (one had been out for a while) and Jameson has fluid in his ears again. So, I haven’t even bothered to put Jameson’s hearing aids in since. Having fluid in your ears can be painful, like being on an airplane and never being able to pop your ears and I wanted to bother Jameson as little as possible. His ENT said to go ahead and put new tubes in his ears. All of this took place over this last month.
On to our follow up with Dr. Fearon:
We started off our day bright and early and checked in to Medical City Dallas at 6:00am for Jameson’s MRI. We got called back to start shortly after 7:00am and he was finished relatively quick, I think it took between 45 minutes to 1 hour. He literally woke right up, no crying at all like last time either. We sat for about 30 minutes or so while he drank some apple juice and ate his little teddy grahams – which he demolished, lol. Next up was anthropology. Jameson gets measured either yearly or before every operation by the anthropologist. I find this appointment so fascinating, he uses some type of caliper and measures a million different angles around Jameson’s skull. Very cool. Then we had media, the same goes here, either before surgery or for yearly follow ups they take pictures of his peanut head.
At this point it is about 9:00am. We don’t see Dr. Fearon until 3:20pm.
We went downstairs and got a bite to eat. Jameson was full of energy (which surprised the heck out of me for a child who just woke up from sedation), so I let him run around the hospital. I finally got him to sleep around 12:30pm, and I’m not going to lie, I fell asleep right there with him! We were upstairs in the children’s area, it was very quiet and we were tucked away in the corner. I just didn’t even care I was so tired, lol, and I know I had to drive 2.5 hours to get back home.
Now we’re up to the most important part of the day, our visit with Dr. Fearon. I have to say that I am so grateful and thankful that Dr. Fearon is Jameson’s doctor. I can’t even put in to words this man’s ability as a doctor and a surgeon. We sat down and he showed me Jameson’s previous MRI and his MRI from today.
The first news is that Jameson has developed a chiari malformation, which is very common with Pfeiffer syndrome. Looking at his MRI you can see a clear difference in the area of fluid surrounding his spinal cord and the base of his neck. In this MRI there is definitely less fluid space, and his cerebellum has less of a rounded curve then before. Then moving on to a different area of his brain, I’m not sure what this area is, but it looked like butterfly wings on the MRI. In Jameson’s last MRI the butterfly wings were symmetrical; on today’s MRI one side was larger than the other – indicating that pressure on his brain is developing.
The good news in all of this is while Jameon’s MRI shows he has developed a chiari, he has not developed any symptoms of a chiari. The main symptom chiari’s cause is central sleep apnea, where your brain forgets to tell your body to breath while you’re asleep. At his last sleep study Jameson had one episode of this; Dr. Fearon said that even if he had 7-8 episodes he would be in the “normal” range, so one episode is nothing. Other signs include dizziness, falling a lot, throwing up – he doesn’t have any of that yet.
So, it’s time for Jameson’s second surgery. His first surgery was an anterior cranial vault; which modified the front of his skull. This surgery will be a posterior cranial vault which will make more room in the back of his skull. They will actually remove some of the bone towards the base of his neck to make a larger area for his spinal cord. This will take care of his chiari. I have read about shunts being used to treat chiari’s – I asked Dr. Fearon about this and he said Jameson does not need one, and doesn’t ever see him needing one, (yay!).
We are not at all surprised by this news. There is something so amazing about the way a parent is in tune with their child. A few weeks ago Jameson started acting different. Nothing that I can really describe, he just hasn’t been himself. He hasn’t had a fever, or classic symptoms of anything, he’s just been off. We were talking about it last week and said to each other that we thought it was time for Jameson’s next surgery. So, when Dr. Fearon showed me the results I just nodded, on some level I had already known what was happening.
It looks like Jameson will have surgery in March, we don’t have a date yet, we are waiting for his neurosurgeon to provide his availability. Instead of getting tubes (he was scheduled for this Thursday to get them) now we are just going to wait and have them put in during his cranial vault to avoid putting him under more than he has to.
We’re going to do Procrit shots again. Jameson did not need a blood transfusion last time. Dr. Fearon uses a cell saver that recycles Jameson’s blood back into his body. The Procrit increases the amount of red-blood cells in the body; with these combined the chances of a blood transfusion are much less. Dr. Fearon said he typically only recommends the Procrit on children 18 months and younger but because Jameson is so tiny (20 lbs, lol) that it would actually be a good idea to do it again.
Our final appointment:
Our last appointment was with a GI. Jameson was sent to a GI a month ago because he is so small for his age. This appointment was a 30 day follow up to see if there was any change after increasing his caloric intake. His doctor was incredibly pleased, Jameson gained almost 1.5 lbs this last month. We have put in back on Zantac in addition to adding a pediasure each day and it has made a huge difference!
Here is a picture of Jameson at the caterpillar in October of 2012 and January 2014, a little over a year apart. ♥
Give a Book is an event taking place in Sun City, South Carolina featuring Jimmy Pfeiffer Dragonmeyer!
The event is taking place February 13, 2014. The premise behind the event is that attendees purchase books and donate money for the books to be “passed on”. The books, envelopes, and postage will be provided at the event and I have been asked to provide addresses of friends, families, educational, and medical centers that may be interested in receiving a copy of Jimmy Pfeiffer Dragonmeyer.
SO – this is where you all come in. If you would like a copy of the book or think someone else or a medical, or an educational facility would be interested please send me a personal message of the name and address you would like the book sent to. TOO EASY!!
You can also participate in the event by ‘Buying a Book and Passing It On’. You can easily send cash/check with the name and address of the person you would like the book sent to and they will send it out to them.
You can contact me through this blog or through email at Aliceann.firstname.lastname@example.org . I hope to hear from everyone! I would love to see Jameson’s book in the hands of kids across the world!
After an 8 long months of trying to get an ABR scheduled, Jameson finally had his appointment today. What they say is true, you really gotta keep fighting for these kids because no one else is going to. All of the doctors have been great, don’t get me wrong, but when one little mistake happens in the system with referrals the process has to start all over again, and if you don’t initiate the process no one else will.
What we have known for quite some time has finally been confirmed – Jameson has moderate hearing loss in both ears, the left is a little worse than the right. He has trouble picking up low and middle tones in his right ear and does okay with the high ones, and in his left he has trouble with the low and high tones, and picks up just a little of the mid-tones. The doctor did say his hearing loss is conductive, which is common with these kids. So, hearing aids are next!
And yes, I am excited about this! I have high hopes that with some assistance Jameson’s brain will start to clearly hear the world around him. He communicates with signs and gestures, and clearly knows what is going on around him, and with added sound his world will just brighten! And since we have already been doing speech therapy I really hope he becomes a chatterbox!
Jimmy Pfeiffer Dragonmeyer is officially published, I made a page and wrote a small blurb about it here. I live across the country from my mom, so I am super excited that she will be here in less than a month to help with the new arrival, because I can get a picture of her reading the book that she wrote to Jameson!
Yes, I am a horrible blogger, but that is a great thing because it means that Jameson is doing his thing and nothing major has happened. Really, I would love to update this blog and share all the wonderful stories and pictures of Jameson but life is crazy and hectic. I went back to school last spring for my Master’s, still work full-time, have 2 wild boys (4 if you include the husband and the dog 😉 ), and am expecting boy #3 in less than a month – so that’s the REAL reason why, lol.
But Jameson is doing what any almost 2 year-old does; for the most part. He still doesn’t “speak”, otherwise, he plays, fights, and gets into trouble all day long. His hearing isn’t so much affecting his ability to speak, but his anatomy and mouth structure. His recessed cheek bones affect his pallate, there is less room in his mouth and his pallate is higher, which makes him stick his tongue out. We recently added tongue strengthing exercises to help develop the movement. We see a speech therapist once a week and he not only adores her, but has learned to communicate with us by signing. It was a slow start getting him to sign, he would generally point and make a grunt type noise when he wanted something, but eventually he has gotten better and better. We started with a few basic words, eat, drink, help, and more. Eat was the first thing he signed, along with an “eee”sound. I can’t even tell you how excting that was!! It’s amazing to “hear” your child talk without words! Next he started signing more, and then he morphed more/eat into a simutaneous gesture when he wanted to eat period. He also picked up the sign for help pretty quickly. The most exciting thing was a few weeks ago when he basically signed an entire sentence together – “I want to eat more banana” – every word was clear and deliberate, well, except for banana because we hadn’t learned that yet, it was just an index finger pointing to the empty peel. It was so darn cute, I wish I had it on tape! Since then we have integrated many new signs, mainly food items 🙂 Banana he does already (it’s his favorite food), and it’s pretty cute too – the sign literally gestures like your peeling a banana – Jamesons interpretation is rolling his fists like in the “Roll It” part of Patty-Cake.
Signing and communication have been the focus for the last few months with Jameson. We are getting ready for a sleep study, and pending good results, his next MRI won’t be until December. Still struggling to get his ABR done – it’s not our insurance, but the local hospital here, and it makes me even more glad that we decided to go to Dallas for his craniofacial care – getting anything done through this hospital is a nghtmare! Ironically, Dr. Fearon said we could do the sleep study this month close to home and fax the results to him so we wouldn’t have to bother with a 3 hour drive- little does he know it is easier in the long run just to drive to Dallas!
Here are some pictures of our summer- Jameson loves cheesin for the camera now, lol.
Just a quick re-cap, he had his first Cranial Reconstructive Vault in mid-December; this is where they went in and took off the front portion off his skull, shaped and sanded the bumps done, put it back on and left about 1 cm of space. ENT also put tubes in his ears; Jameson has always had fluid build up and never successfully passed a hearing test.
Where we’re at today:
We’re about 3 1/2 months post-op and Jameson is doing great!! You can barely see his scar, you wouldn’t even know it was there if you didn’t look closely (and he definitely doesn’t act like a kid that’s had major surgery!). The craziest thing about his scar is that you can literally see how it stretched as his head continued to grow post-op. And it’s more stretched on the sides than the top of his head.
His appetite increased a lot after his surgery and he’s had a nice little growth spurt. He is officially bipedal; I have the widest shoes for his little feet, but am investigating if there are better options for him because of his big toe curving out – I don’t want to squish his tootsies in there!
We no longer have plug-outlet protector’s because he likes to walk around the house and take them out one by one. So, I stopped putting them back in, lol. It has worked he doesn’t go near them now.
He might possible believe Tennessee is his own baby. He adores the dog and is constantly following him, and hugging him, and “barking” at him. And he is sure to make sure the dog is fed. He has a one-for-me, one-for-you routine down during meals, he takes a bite of his food and drops the next one the floor, lol. It is actually one of the most adorable things. I thought Jackson loved Tennessee, but Jameson LOVES this dog!!
At Jameson’s 6 week post-op follow up Dr. Fearon was very pleased. Jameson’s head had expanded an entire 2 cm, and his scar was healing beautifully. We also had a follow up with ENT while we were in Dallas to make sure the tubes were in nicely. The tubes looked good, and there wasn’t any fluid in his ears, but he still couldn’t pass the hearing test…
The recommendation from the audiologist who put his tubes in is to have an ABR done. This was the original recommendation from a different audiologist last summer/fall because it’s the only way to know exactly how great his hearing loss is; but they also felt it might be best to wait to see if the tubes made a difference. Now, we have mixed opinions on Jameson’s hearing because we noticed a drastic improvement in his ability to hear and his response to sound after his tubes were put in. It has crossed my mind that his ear canal’s are shaped differently and that may be contributing to not passing the test – the test he keeps failing is the otoacoutistic test, where they put headphones in his ears and measure the echo response. He had two other hearing tests where we sat in the booth and sounds were projected from different speakers. The first one he did not do well on, the second one he did okay.
First thing is an ABR. His referral should be here by next week so hopefully we’ll get that done in the next month.
Dr. Fearon doesn’t need to him until July; at that visit we’ll have an in depth eye exam and another sleep study. At our last visit (the 6 week post-op) he explained that the two biggest factor’s in Jameson’s development are going to be space for his brain to grow and that he’s getting enough oxygen – they just made space, so the sleep study will check his oxygen. The eye exam he wants done has some specific things for the ophthalmologist to look at, including the optic nerve, any scarring on the cornea, and strabismus. After that the next visit to Dallas will be in December for MRI #2.
Jameson’s first year we had 4 visits to Dr. Fearon/Dallas, and if everything continues to go well, his second year we will have only 2 visits to Dallas!! I know that some years will be more hectic than others, but I hope that Jameson continues to thrive without major complications. 80% of his brain will be developed by age 3 and if we can make it to 3 for his second surgery I would be thrilled! The next hurdle will be his mid-face advancement between 6-8 years. Otherwise, we are just watching him grow!!
Here are picture’s from the past few months:
Jameson’s 1st Christmas:
Enjoying the beautiful weather 🙂