My sweet peaceful boy in his rocker after I sneak out. I can't even count the hours I've starred at him at rest and gave thanks for this perfect human.
Sad to say we lost Miss Jenn, our feeding therapist who was the best feeding therapist on the planet. We got to know each other so well not just because we have been seeing her for so long but Everett would eat best when she and I would not put attention on him and just chat so we talked about our kids, our jobs, and she is so easy to talk to, so positive and supportive. I've even needed her since she left us and of course she has been right there to help us. She is one of the kindest souls on the planet and has really helped Everett grow. He still doesn't like self feeding. It's something I'm really over after four years. Each meal knowing it's going to be a battle not only to try and get him to eat, let alone try and get him to feed himself. It's exhausting and he is so stubborn this is one area I'm discouraged about. He is making gains, but they are so slow. He'll feed himself pretzels, yogurt bites, a Publix chocolate chip cookie (not just any cookie), and sometimes crunchies which are a transitional food for babies. If I help him load his fork and guide his arm he will feed himself pizza, oranges, peaches, (spoon) yogurt and applesauce. If he is HIGHLY distracted I can get him to feed himself by placing my hand over his hand and taking it to his mouth - noodles, pb and j, eggs, pancake, and a few others. He still cannot chew meat, and the therapists say it's still not safe to try nuts, dried fruit, apples, etc. We were without feeding therapy for a few months and we just got started with a new one, her name is Barbara, a good solid name! ;) Hopefully he starts to take over soon, I know it's a lot with his coordination but I'm a pretty good judge of his abilities and he has always hated eating (hence 50 some days in the NICU) and I wish I hated food as much as he did and we could trade positions!!!! He drinks from his honey bear cup still, it's his favorite and it has a straw so that helps his lip closure which helps with speech in general so I'm not messing with his cup. In the car he spills and plays with that cup so he has a baby transition cup for the car that he loves and doesn't spill. I just asked her how long I should tolerate him drinking from that. Barbara saw us way back for a bit before we were with Miss Jenn and she notices his leaps and bounds from not wanting to eat anything so she aligns with Jenn and they encourage me to be okay with where he is at reminding me that nutrition is most important and it's okay to let him move at this slow pace. I try and be patient but feeding someone who fights you each bite (almost) for four years is wearing on me! I'm sure that message is loud and clear. I'm very proud of my little man and remind myself when I'm feeding him that I'm thankful he can eat real food and doesn't have a g tube, and sometimes that works...and sometimes I'm just ready for him to take the spoon and go to town.
Language - speech side - he just had a big spurt. He is now trying to put two words together. He still doesn't realize he can tell us what he wants but I think he is getting closer. He is making it clear when he is mad, or when he wants his turn. I remind him how to use his words and he does. His articulation (how clear he speaks) is improving a lot. L, R, Z, M, N, H, Q, V, X are not developed but there are a lot of words that are as clear as day and some that are def close enough for others to understand. Of course there are even more that only I know (or maybe clara and andre) what he's saying. He does have some demands, "up", "down", "DONE", and he is starting to answer yes and no questions. Before if you said, "Do you want yogurt?" He would say yogurt. Then if you said, "Yes? or NO?" he would say, "No" or whatever you said last. We took a break from speech for a while during the school year. He is getting all of his therapies during school too. It was just hard to get to all four outside of school and I thought since he was being integrated with peers and hearing so much language all day we could let that go for a while. I noticed a decline and mentioned it to Miss Jenn who was still seeing us weekly for feeding and for those of you that aren't familiar, an SLP (Speech Language Therapist) can do both feeding and speech, so she did an evaluation to see where he was after I voiced my concern. Unfortunately I was right and he went back a bit with his communication skills. We had been working on getting him an AAC (Augmentative and alternative communication) device which allows him to push buttons to communicate. There was a lot of work that went into that and getting him using it properly. It's amazing how quick he was, he surprised all of us. He learned the system quick and in the first session requesting pretzels. He is such a smart boy. Speaking of smart! The boy can read about 50 words. The list is growing so rapid I cannot even keep up. He has been watching "My Baby Can Read" videos and one day when he was about 3.5 I busted out the books off the shelf I hadn't yet looked at. I cracked the freekin page and he could read each word. I'm not shitting you, I almost peed my pants I was so excited. There are no pictures showing. I was wondering because each word has a different font if maybe he had recognized the words because of the fonts they had so I wrote them on a paper, NO PROBLEM! He can read the word and it's not like he just has it memorized, he understands the words, all of them. They're common everyday words, but random...like -- elbow, sit, cup, the, elephant - so "phant" is elephant and many of the words that are harder to say only we know what he is saying but he IS saying them and they are consistent, it's insane. His speech therapist is blown away. I remember after he was born, I was reading one of the many books on DS and I highlighted a part that said not to teach them phonics skills. You can imagine I was ready to teach him to read STAT so this stood out to me, I was taken back at first, wondering why. The book explained that it's too complicated for the age kids start to read with his delays and that kids with DS are visual learners so they'll memorize the words quicker. YUP! I'm so glad I read that sentence. I trusted it, and remembered it and it was true! So of course I bought the next program up since he knows all of the words from the first four videos and we are moving on to the next! I cannot wait until he can tell us everything in his head. Something that is so hard about having a nonverbal child is that you want the world to know how smart he is mainly because he works so hard and I think he would really surprise most. I know it's nonsense, but when your kid works so hard, and is doing so good, you do want others to see it. When he is around anyone you wouldn't know he can count to ten, identify all letters and almost all the sounds they make, all of his shapes and I'm talking about pentagon, hexagon, etc, READING, identify all numbers to 20, things I don't think most would think a child who is a fresh four year old would know. When he starts to get this all out and express himself with language, WOW world, watch out! I can't wait until he doesn't shut up. His favorite word is socks and he says it all different kids of ways being silly and when you want him to say something or do something he'll just say, "socks" in a soft silly voice and start laughing. He finds ways to make others laugh, he knows how to do it and once he gets comfortable with you, that's all he wants to do. It's quite amusing unless you're trying to teach him. ;) He is a very silly boy and all those that have the opportunity to get to know him see his intelligence and how hard he has worked and are amazed. Just like me!
In OT he can use his fingers a little better. He did learn how to make four because we practiced on his fingers for his bday. Counting in isolation on his fingers is a no go past three but he starts with his thumb so to do four he needs to redo all his fingers which throws him off. He is using his pincer grasp more than not. He is so over puzzles and sit still and do those kinds of tasks so it needs to be coupled with movement. We are working on scissors, yikes. I bought him a special pair we use in OT that have a spring that keep them open and he just has to squeeze to close them, he is not a fan of that motion. He can make a cross, circle and square, the circle and square are the shape but not precise. I'm just so proud because he tries so hard. Sensory wise, he plays with paint, puddy, play dough, and shaving cream fine. He gags with slime and water beads. He doesn't like slimy. He is a clean kid, once his hands are messy he tries not to touch them to things which is nice, he holds them up in the air away from everything. We are working on upper body strength to help with feeding so he is on a scooter board in OT and we are trying to get him to bear weight through his shoulders and it's two for one because that helps his hands and their function too.
I cannot begin to tell you how much I've learned in four years about development. I wish I would have had the time to write a book along with each step, more in depth than the updates here. I want to hand over everything I've learned and all the resources to the moms that are just starting out. I want to have a "kit" that is provided for our kids so each parent doesn't have to wrack their brain trying to come up with one million ideas about how to get your kid to learn this skill or that. You know kids and how quick they get sick of things and bored. I get picked on because of all the toys we have in our home. No one really understands there is a solid purpose behind almost every single one. Each one does something different for him. Most moms look at a toy completely different. Now, because of E, when I look at toys, my brain rushes through, "well this toy will do this, and it could hit this skill, and we could work on the function of this, review colors and he needs to learn to push down with a single finger so this would help that, but also he could eventually learn this..." my mind races when I see something good and new that is also entertaining. Fun goes out the window, a tad, it's still there a little because the kid has to like it for me to accomplish anything but my focus is what can he learn from it. I know it might seem like we should just have fun, we do, we do both. I also made sure now that he is definitely into things like Elmo in particular, that I get him just "fun" things too. Big hits have been a couch that turns into a little bed he loves, a blanket, his pillow case, etc. I really do try and find the happy medium, he is always happy while being pushed a bit and we ALWAYS have plenty of time for snuggling and cuddling while singing songs in the rocking chair. I envision holding him in that rocker when he is ten.
In general Everett is a very happy, funny boy who gets really frustrated when he cannot do something. He plays on his own forever and a day, needing zero attention, like ever. I have to time myself when I'm doing chores to make sure I don't ignore him for too long and sit and play because A. he deserves the attention and B. he needs the attention developmentally. When he plays alone he gets flustered once in a while but moves on. When trying to work with him on those next steps lots of fun things have become frustrations. The park still sucks. He wants to run and climb and his body limits him and he gets SO mad. He literally stops and just cries. It breaks my heart. He wants to swim but doesn't like going under. He wants to play with his toys a certain way, the way he knows they are intended for but his clumsy fingers will hit the wrong thing and he throws it. If he gets hurt he isn't easily soothed he is mad and wants to squeeze your arm skin. His poor sissy gets the worst of it and she will always run to his aide. When he is hurt, or mad, he pushes her and squeezes her little bity arms as hard as he can and he is STRONG and she takes it and keeps soothing him while saying, "Mommy, he hurt me...it's okay bubby, it's okay, but mommy he hurt me" and she won't back away from him. She really is the absolute best sissy on the planet and he knows it. He has even pushed me recently when I tried to console him after he fell out of a chair. He is angry when he can't and internally I'm angrier for him too. I cannot stand how hard most things are for him. Now that he is getting older I see how he is left out and not doing all the things the 3/4 year olds are doing. I live in a bubble sometime of our happy little family at home and when we go to birthday parties or get togethers my heart breaks a bit knowing it's beginning so I focus on the little moments and know just like everything else, "he'll get there" which is a saying I love and despise all at the same time. Knowing he'll get there gives me hope but man, I hate hearing, "Oh, he'll get there", it's a broken record from teachers, therapists and all who are trying to encourage us. I get why people say it, but we just want to be there, I know Bubby does, and this mama does to. So we take deep breaths and keep going knowing life is good, even though it can be hard sometimes. I'll say, "Bubby, can mama have a hug? Can mama have a kiss?" and of course he does and all my worries wash away from the little body that makes my world go round! I cannot explain my love for him other than it makes my heart want to explode.
Just when you thought you were done with the update, I covered all developmental areas, NOPE! Read on, we cannot just go on with business as usual this boy has to land himself in a less than 1% category, I guess he just likes to stand out.
So those with DS have about a 30% chance of having instability in the neck. This means C1 and C2 which are the highest vertebrates on you spine, can be loose in those with DS. The general rule is to wait until 3/4 to make sure the bones are in the correct place to even tell. So at 3.5 I asked one of the three pediatricians we see for a script. She tried to talk me out of it. (rolling my eyes) First, she is the one I like the least and only see her when he is sick and I can't pick. She was telling me this was a "thing of the past" and I let her know I read updated information and this "thing of the past" is still current and write me the damn script so she does what most people do after they make me mad about me protecting my kid is do what I want so they can shut me up, both of our problems solved. Needless to say it too me a month after to get him in, I got the script around the holidays and got him in sometime in February. I got a call in March that I needed to see Neurosurgery and I should have panicked then, but oddly I didn't. I remember when the lady took his x-ray, she had been out with an injury for four months and it was her first day back. She was flustered with Everett who I thought was holding perfectly still and she took a few extra pictures that I was getting annoyed with since I don't want him exposed to any more than he has to. Therefor I assumed she got bad pictures and he wanted to do more or a possible MRI which I thought was normal. (No idea why my brain told me this, but oblivion was bliss) We saw the neurosurgeon in April and he explained two scenarios to me. First, was Occipital Cervical Istability and all he said was, "The good news is, your son doesn't have this, it's very rare." Then he explained Everett had 7mm of movement. He explained typical kids have 2mm and anything above would need surgery. That's where my brain went from coherent listening to fuzz and I have to ask him to stop and repeat everything one thousand times. He said that those with DS have greater movement because of the laxity of everything in their body and they usually accept 5mm and watch them closely and restrict their living. Everett being 7mm wasn't that much more so he diagnosed him with AAI (AtlantoAxial Instability) and took me into his office to show me, as he was showing me the results he ended up measuring 10mm and didn't want to get into surgery conversations until we got an MRI to see if there was any damage to his spinal cord.
Of course there aren't appointments until July to get in to get the MRI done AND see him directly after to go over results so I scheduled it for June with with the results a week later. Thankfully I'm really annoying and call everyday because they don't have a cancellation list and they get sick of me quick and we got in at the beginning of May. I called when he was getting the MRI done to see if there was a cancellation to meet with the doctor and she was so annoyed with me at first and said, "Why are you calling again, didn't I get you in this morning for the MRI?" and I told her yes, but I wanted to see the doctor today and she magically got me in at 1. Tara at the neurosurgery office is not a fan of me. Bubs had to be put under to be still enough. The anesthesiologist came out saying, "I'm not sure why they had you do the MRI, he looks perfect." Which was great news for his spinal cord but I knew it would put us in a predicament for surgery. Clearly I don't want damage but I want black and white when it comes to surgery. Everett surprised everyone, he came out alert and ready to go. We packed a bag because they said with his sleep apnea we will have a bed a likely get admitted. He wasn't even drowsy and drank his whole milk (which he threw up later) and they let us go so we could go meet with the dr. I got up there right before his lunch at 12 and offered to buy him lunch so we could meet and go home but he declined. Andre met us and we found out from him that yes, his spinal cord looked great, thank goodness. Dr. Rodriguez (guy we have been seeing) explained he also continued to measure his x rays and the max movement he found was 14mm. This is as large as it goes and puts him in the "Occiptial Cervical Instability category he was so thankful we were NOT in at the start. Had I had my whits about me which I never do in these appointments I'd say why the heck didn't you measure more careful from the start to give me this solid number and diagnosis from the beginning?!?!? I guess you can measure in a variety of places on the spine but what I don't get is why one wouldn't measure ALL the places to make sure one gets the EXACT MAX amount before reporting a diagnosis to someone?!?!?!! With that being said, everyone raves about him and his practice. I somehow get this type of story no matter where we go. A nurse in the NICU said, "Well at least he doesn't need a broviac, you're doing good if he doesn't need that." So a few weeks later when he needed the broviac (a surgery to place a central line to have access to blood) I knew it was time to panic. So again, I knew it was time to panic. Everett has less than 1% change of having this issue so here we are and the dr. says these exact words when I asked him what we should do, "His x rays make me EXTREMELY uncomfortable, but your child is perfect the way he is and I can only make him worse." As much as I forget what doctors say in appointments, I'll never forget those words. He would not tell us do it or not. He said he used to fuse quickly and was more aggressive, he has done a lot of research and isn't sure if it was always necessary. We said we would get more opinions and he said definitely do and likely they'll tell you to fuse. What the heck do you do with that? Well, we scheduled surgery at first because we panicked. We want to protect him. With this type of instability and the place at which his scull and spine put pressure on his neck can easily bruise his spine and cause his limbs to stop working or worse, cause him to stop breathing. We were set, May 22 was the day. I researched and the surgery looks and sounds horrible. I'm connected with many different DS groups on facebook and one message was clear, this surgery is horrifying. I wanted more opinions. I got a couple connections from FB and a dr. from Philly from Shriners emailed me back saying to do the surgery. I needed more information. The trouble is there is NO research on issues that are less than 1% likely to happen. We don't know if bubs is okay because of pure luck or if his body is just capable of such movement and surviving just fine. What I do know is I'm now in panic mode when he falls or plays around other kids running around him fast, etc. I'm so scared to drive and we drive A LOT. We decided to cancel the surgery and learn more. We both felt 1 billion pounds off of us. I thought we could give it a year, watch him, although he said it won't get better. I asked him if I could get a brace for the car and he said we may as well do that surgery if I want to brace him for the car. We are so confused about doing the right thing, Everett has been through enough. His tonsil surgery was super duper traumatic, he almost had a central line and g tube after that, I cannot even begin to imagine what this type of surgery will do to him.
So, the process this guy uses which he has 100% success rate, is putting a plate in with screws and bone graft from a cadaver bone. The screws and plate are not needed after it fuses but they are left in there to avoid hell again. Apparently it's typical for this to grow with him although he is small. Of course there are 1 thousand dangers I'm trying to avoid thinking about since there's no point. There are so many nerves and his bones are so small! So the two diagnosis from above, the difference is that instead of fusing C1 and C2 which is a cake walk process he needs to fuse the skull with C1 and C2 which is trickier of course. He's going to lose some movement, that's what the goal would be, so he won't be able to bring his jaw out or draw it back and he'll lose 50% of range turning left and right. So if you look left, you can crank your head 90 degrees, he'll be able to go 45. Apparently he says he is so young he should never know the different. My concern other than healing, and everything going well with the surgery is how will this affect his eating. These small movements can affect his swallowing. Of course my amazing old feeding therapist got me articles about the issues with feeding after this type of surgery. Unfortunately I don't think anyone can tell me in advance answers to most of my concerns.
From all my reaching out and research we got 4 more opinions in the books. Thus far I've gone to Miami to see Dr. Shufflebarger who is about 100 years hold and has done this for over 40 years. He is a pediatric spinal surgeon. We went to stay with Ana. We wanted to leave Sunday but I couldn't find the disk with his images on it I thought for sure he would need, I'm pretty sure he didn't need it after all. I could have saved 5 hours of searching, tears because my plan was spoiled and I felt bad I let Ana down, 10$ to buy a new disk, and my sanity. I rarely lose important things, I have no clue where this disk is and I really never want to see it because I'll be so mad wherever I put it. My boss even went out of her way to meet me at work to see if it was there, nope. So we left Monday morning after imagine opened and we got our new disk. We enjoyed a day with Ana, Theresa and Addi, before busting out the door by 7:30 for our 9:45 appointment. I had an hour of flex time because ya know, Miami. There was an accident so my GPS had me going all over back roads where peeps really do drive like maniacs, I thought I was an aggressive driving, Pah! I got nothing on Miami. Clara had to poop and we were stuck solid on the highway, so thankfully I have the potty in the car since it's our third home after our actual home and the therapy building. It was worse than Jambo when Gia dumped our "great idea" of using Aunt Kays old lady potty after we all released furry after a night of partying. First, I have no idea who thought that was a good idea. Second, I have no clue how Gia carried that into the woods to try and pretend like it wasn't us. We even had lime to cover the smell and it didn't work. Talk about prepared. Well, I was prepared for Miami too but it smelled just like that hot stagnant morning on the hill at Jambo and we had 45 minutes to go. Bubs even gagged a few times in the back. We got there with time to spare and I left my purse in the car, after the valet parked it a mile away because I locked it safe in the glove box the day before on the drive over and forgot to put it back in the diaper bag, ya know, thinking safe doesn't help my brain. THEN we get to the office which felt like Alice in Wonderland, I felt like a Giant among many little people crammed in the tiniest waiting room and then the tiniest patient room. The patient room had a bed half the normal size, a dr spinny chair, one chair for the patient, and an airplane sink and soap with space enough above for gloves. Oh, and by the way, they wouldn't accept the script from the dr. Told me I couldn't be seen, after the poopy drive, things got poopier. So I called my doc office and explained the situation trying to hold back tears thinking we drove all this way for nothing and they faxed it over right away, THANK THE FAXING WORLD! Dr. Shufflebarger literally shuffled in hunched over with another doc with his degree who I'm assuming is taking over for him yesterday. He was a kind man, soft spoken and dry humor. He told me I asked blunt questions. I'm not sure what kind of questions I was supposed to ask, I wanted answers. He told me there is no way he would let him be, he would preventative surgery. He is the one that explained how uncommon this is and that the only four surgeries done like this in a years time there was done on four adults after bad accidents. :( This makes me so weary having my little boy have to have it. He said he would put Everett in a Halo which is that terrible brace that holds their skull still by attaching the metal brace to their head and casting it to their body. He said he wouldn't risk injury and leave it on for a solid two months. He also said he would use cellular bone graft substance which is man made bone or bone from his rib because he thinks it fuses better. So he gave me a clear answer and some new things to think/ask about. I asked him if he had a portal I could use to ask any more questions I think of and he said just call his nurse Michelle and she'll make him call me back. Ha. I was supposed to wait beyond that three hour visit to meet Michelle before saying goodbye, I felt rude, but I left. I had had enough in the first five hours of that day. We met Ana for a nice lunch and hit the road Jack.
Next was a second opinion from the same office Dr. Rodriguez is downtown St. Pete. Side note, I'm so thankful for where we live and that I have all these experts at my fingertips and our offices are normal sized with all the normal patient amenities and to top it off our views are of Tampa bay. Really, really thankful. So, we saw Dr. Jallo who is the medical director of his crew of four so he oversees Dr. Rodriguez and people come from all over the world for him. He was as direct as Shufflebarger, he said no doubt, do it, he isn't safe. We asked many more questions and he confirmed our thinking all around. He said Dr. Rodriguez is the only one that does the surgery Everett needs and in cases like this where it's not common they each have their own niche and he spoke very highly of him as did the surgeon from Philly. He said Dr. Rodriguez won't know if he will brace Everett until he is in surgery and he sees how stable his bones and the screws are and also looks at the x ray after to confirm. Therefore, Everett may end up in a Halo, a soft neck brace or hard neck brace, but Dr. Rodriguez doesn't typically use bracing, time will tell.
We see another surgeon next Wednesday in Tampa. I want to hear everyone out. We were supposed to be going to Gainesville but I think after the Tampa trip I will have enough. I already have enough but Tampa is so close and I always have more questions, why not. Gainesville will be harder with the trip and they have been quite complicated with paperwork and getting Everett in.
I'm sure I'm leaving you all with questions I forgot to answer. They all agreed to just restrict him from gymnastics of course, the can that opened these worms thank goodness I didn't just enroll him. Any jumping or contact sports because we were planning on signing him up for football this summer. JUST KIDDING. He tipped out of his chair and fell yesterday and my heart sank, there'll be no jumping, bouncing, or crazy behavior for a while. I'm so thankful his body protected him this long. No one can say if it's been like this or if the movement has increased recently.
I have a few more questions I'll be asking Dr. Rodriguez personally before July 1, D day for my baby. I know I don't like the life of worry we've been living, I'm hoping and praying this all goes well and we can look back and be glad we protected him and he can live a full life of playing around since his stability should be better than ours once he heals. I'm very scared and hopeful all at the same time. I'll do my best to keep updates for those that check here post surgery once he's doing better.
Our plans for driving home are no longer. Maybe miracles will happen and he'll be super healed super fast and we can make a trip at the end of July. Until then, be prepared to see pics from as much fun as we can possibly pack into June.
My apologies for waiting too long for an update and not proofreading this dissertation...
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