all our dreams can come true, if we have the courage to pursue them.— Walt Disney.
Everett has had his new “feet” as some people call them for about three months now. And as to what any person would expect he is doing absolutely amazing!
The decision to get his AFOs were because he stands with the inner part of his feet. So he has no balance. He got fitted for them by them making a cast for his feet to make the mold. We got to choose our colors, and of course no questions asked we HAD to choose the hawks! Waited a few weeks and went back to get them fitted and put on, and he even got shoes with laces! 🙌 He absolutely hated them at first, plus this was the first actual experience with them for mom too.
At first we were doing a couple hours. Then worked up for the whole morning time. Now we just worked in all day!
Everett is now walking with just holding one persons hand and his “kinda” starting to stand independently. He loves to cruise around all furniture and climb up and down on the couch and other objects all the time. I just mentioned to his therapist about working in a gait trainer, which is a different kind of walker. It’s hard to think he’s nearing his 2nd birthday and isn’t walking yet. At this point he’s getting taller and the typical walkers made for infants are too short for him. We are just hoping soon he can get enough balance and strength to start to take off on his own. He is one stubborn little boy, and is super mobile and interested in everything which is great to see! But sometimes this condition sucks so much and there are days that take more strength then others to get through. I’m just so happy and grateful for all that he is able to do!
I know all parents go through old baby clothes and think “they were so tiny”! Well the other day I was looking at clothes to give to a close friend and all the memories came flashing back!
All the planning and purchasing of clothes before hand was “typical”. Thinking….. Oh we’re not going to get newborn clothes because they’re not in them long. Little did we know Everett was going to spend MONTHS in these tiny clothes. Of course he definitely got his use out of all of them which is so great. When Ev was first brought home I though the same thing. Oh, I’ll get some more just to get us through the next couples weeks. Well weeks turned into months and honesty his clothes were the last thing on my mind.
Looking back that time passed so fast but it felt like time was at a stand still, just like any stressful period in someone’s life. I think of how far he has come and am truly blessed. Even though Ev is still wearing size 12 months and is nearing his second birthday. Somedays are hard looking at other kiddos his age and where their at and where he should be. But man, he has a personality of a 4 year old!
There are always going to be hard days and good days. Which also mirror what is going on in other areas of your life. I mostly get sucked into the day to day business and don’t have “time” to just stop. Lately, honestly things have been tough in all areas. But it’s ok to not be ok! We all need that as human beings and mothers.
Today Ev had his every 6 month assessment in Iowa City. This is a appointment that I dread every time because it lasts about 4 hours. As much as I’m exhausted from it Ev is just as much. During this appointment we met with PT, OT, Speech, a doctor, a dietitian, audiologist and a social worker. Our recent trips to Iowa City have been so daunting and scary because of the pandemic but, not in one way did I not think proper measures were in order to keep us and others safe.
Today’s evaluation went so great! It’s amazing how in 6 months this little guy can change! He has advanced in all areas, but is still developmentally delayed in all areas as well. Ev is now waving hi and bye, dancing, likes to brush his teeth, cruising along furniture, scoots so fast, gets into about anything that’s not his toys and is becoming very vocal!
Two main concerns were eating/gaining weight and walking. These are not surprising. I feel like eating and gaining for Ev has been a issue and struggle since he wasn’t even a hour old. We have also decided that it was time to fit Ev for AFOs, which are braces for his feet to give him better support and stability. When Ev stands his feet go inward so this will help straighten them out and give him balance and support to encourage walking. Next week he will be fitted for them and get new hands splints and also have feeding therapy.
Even though these appointments are necessary to help his development and future, facing this head on still hits you like a ton of bricks. Going through daily life I don’t think twice about who Ev is because we don’t talk about his disabilities it’s always about his “abilities” and what we need to do today. He is the most amazing happy and strong little boy I know! I feel so blessed and thankful to be his mom. Yes he’ll get through this he always does, and comes out so dang strong on the other side.
This is the first time we are a part of feeding tube awareness week with Ev’s tubie. I can’t and would have no idea this was going to be a part of our life last year at this time. Even though there still are days that I question this part of our journey, the benefits out weigh the struggles that we might have. I thought I’d share a little tubie update considering this awareness week and since we have had it for awhile now.
Why did we decide to have a feeding tube placement? Well…. ever since the day Ev was born he always had a hard time eating. We were struggling to get the amount of food he needed within hours of him being born. He had poor sucking reflexes and didn’t feel the urge of being hungry. After months of poor weight gain, stressing that he was getting enough food and stubbornness the decision was made.
Will he have this tubie forever? The main goal is no, but I don’t have a definite answer. I wish I did….. We still offer solids as much as possible. Until he is able to get the amount of food he needs everyday and doesn’t use the tubie for at least 6 months then it can be easily taken out. It’s a lot easier to leave it in then go through another surgery if he would need it again.
Does it bother him? Absolutely not! He thinks it’s pretty funny to mess with it when it’s not covered by clothes. There is also daily upkeep to do but very minimal. We have to keep it clean and change the dressing around it twice a day. You can also be really creative about the dressings that go around it. They make really cute ones called button buddies! We also pay attention to the build up of tissue around it. For sanitation reasons the tubie is easily replaced every three months, which takes less then 2 minutes to do. Also checking the amount of water that’s in the balloon in the tubie once a month. These are all things we are able to do at home.
Is the feedings complicated to do? Once you do it once you wouldn’t think twice, but it’s very intimidating at first. I’m so thankful for people and family around us that have jumped right in it to learn to do the feedings with the thought of Everett’s needs first.
He is not limited on what he can do with it? Just by looking at Ev you wouldn’t think he had a feeding tube at all. The tube doesn’t limit him from doing any typical things a baby could do. Yes there is a risk of it being pulled out but that’s something you have to realize going into it.
The past month or so has been a struggle trying to increase his food intake and his body pretty much telling us no, it’s not ready for it. Also when he gets sick just like us his body reacts the same way even with a tube, and we have to slow his feedings down a bit.
This tubie journey hasn’t always been the best and I have questioned it in those times, but what journey isn’t. We’re all learning along the way. I’m so thankful I have another family to talk to about our tubie struggles with and to learn from. With anything you just have to trust your mom instinct and know your child. It’s easier said then done but I feel like when you know you know with anything.
A couple weeks ago I received the news and confirmation of Everett’s diagnosis. You all probably think, yeah we received his diagnosis a year ago. Well…. we decided to get the confirmation of the specific gene that is affected with SLOS, which is the DHCR7. His initial diagnosis was from his cholesterol levels which is associated with this genetic condition.
When getting the phone call I was prepared to hear something more, or worse like in the beginning. The doctors saw what they were expecting with the mutation in that specific gene, and that he did get both of those copies of the gene mutation from both parents. Just to verify this I have decided to send in testing for myself, just to make sure. We were offered to do this test in Everett’s case and I decided…. Because why not?
After getting the phone call it was almost like hearing the news again about his diagnosis. And let me tell ya it never gets easier with those reminders. It just reminds me that he will be different from everyone else. And the older he gets the more it shows.
Everett shortly after got a little bug that resulted in taking him to the Emergency room. These little bugs usually hit him harder then others. This was yet another reminder of this dang disorder. The doctors and nurses were so amazing but, while there and discussing his syndrome and history they always have a puzzled look on their face. It could also be something that I’m always looking at when describing his condition. They were even somewhat thrown off by the feeding tube. Every time this happens I just hope they don’t send us off to Iowa City (which we were already at that morning) because it is so rare, and just don’t know. Good news was he just needed some snuggles, medicine to help with his stomach and recovered within the week. We are also still fighting a battle with his vomiting and using the gtube. Sometimes I get completely overwhelmed with it and the vomiting, but need to remind myself again and again that the benefits outweigh the negatives. Everett is growing and doing so many new things that remind me that we are doing the right things for him to be on the right path.
I thought I would write this next blog on Everett’s diagnosis, just to give you all some insight of it. Smith Lemli Opitz Syndrome is a genetic disorder and affects every child very differently.
So Smith Lemli Opitz Syndrome or SLOS for short, because it can be a mouth full at times to say. It is named after the three doctors that discovered the syndrome. I absolutely hate the abbreviation of this condition when referring to it at SLO pronounced “Slow”. I tend to say Smith Lemli Opitz saying it so much it rolls out quick, or say SL OS.
This syndrome affects around 1 in 60,000 children. SLOS is caused by a gene mutation in the DHCR7 gene that’s helps makes Cholesterol in your body. By not having this work correctly it can cause various developmental, intellectual delays as well as other physical features. There is no cure for this condition, just various diet changes that “could” help. This specific gene mutation only happens when both parents have that gene mutation and the baby gets both copies. If both parents have that mutation they have a 25% of having a child with SLOS.
Children have very different severities of this condition, even if they are conceived by the same parents. Some severities can be life threatening. Things range from low muscle tone, facial features, feeding issues which lead to feeding tubes, slow growth, vision issues, webbed or extra fingers or toes it can also affect some organs in the body such as kidneys and heart. Some children go years without a diagnosis because there is such a range. Which is a simple blood test. We went through a whole pregnancy and many tests until a official diagnosis when he was 3 months old.
When talking about this condition with others I tend to focus on Everett and what’s he’s doing and how he is affected by this. I’m beyond thankful that he is striving because I know that we could have been dealt a totally different card, with how difficult this condition could be. I’m also blessed with a support group that’s feels like family. There are still times of very high highs, and low lows that goes along with this journey. What I have learned is to take it day by day. 2019 for us was a year full of a diagnosis in February, surgeries and unexpected lows that I had no idea that was going to happen. Our last appointment in December was the highest point! I was excited for our check up and everything and all the tests were great, for once. That was the first time I walked away with happy tears of joy. Never did I think I would be so happy for a appointment. Whenever it’s time for another appointment it’s just another reminder of the struggle. We are always blessed though with a amazing support system where ever we go!
Throughout our journey there were so many obstacles being thrown at us, and having no idea where to even start when finally finding out the official diagnosis. Starting our therapy journey was a huge step. We had more people on our team wanting the absolute best for Everett.
When starting PT and OT therapy about four months ago was daunting. It was one more thing added to the list of things needing to be done. Since Everett was born and developing it was obvious he wasn’t meeting his development milestones at the time he was suppose to meet them. As a mother, working and being familiar with children as well I became more focused on what he wasn’t doing instead of what he was doing. Which is a horrible thing to have in your mind, even being a parent to a “typical” child. I also still look at other “typical” children and also children with the same diagnosis to see what they are doing and when.
I couldn’t expect a better therapy team to be with Everett during this journey! Our PT and OT therapist are amazing! We see the PT therapist twice a month and OT once a month. They are always checking in and so positive. Today they never expected Everett to be doing what’s he’s doing so soon. I think the biggest and best decision that has helped was his feeding tube. What I thought was going to be a set back, has given him energy and nutrition to meet these milestones even faster.
The PT therapist is now working on him going from sitting to standing, and getting back down. Also getting from laying down on his back to getting up. In just these short 4 months he went from not really wanting to roll over, to scooting all over the place and pulling himself onto objects. The best feeling as a mother right now, is your child visiting you in the kitchen or getting ready for the day in the bathroom. I wouldn’t change being bothered for the world to look down and see your child at your feet.
The OT therapist is working on what Everett is eating orally. He still doesn’t eat big pieces of food, but he’s really independent and wants to pick up food and put it in his mouth. He is also working really hard and doing well with grabbing small puffs of food and putting them to his mouth. With Everett’s diagnosis he does have trouble using his thumb, because it is a little smaller and the spacing between his index finger and thumb is shorter. He has been adapting really well by using kind of scissor fingers to grab and play with things. He is now wearing splints at night to extend the spacing between those fingers. Everett’s loves yogurt and feeding himself independently. Unfortunately he doesn’t always consume the food and spits it out. He still doesn’t take enough food orally and we do rely on the feeding tube at times but he is making huge gains!
– pulling up on objects and getting down
– eating bigger pieces of food orally
– taking more food orally
– clapping hands
– making sounds
At the end of the day there will always be set backs and gains. He might take one step backward but will take three steps forward. Therapy is just a little push he needs to meet his milestones. Everett has surprised everyone and has made a impact on everyone that has met him. Sometimes we take things for granted but have to look at the big picture. I know at the end of the day he WILL be ok, because he is Everett.
I have gotten so much feedback and requests about different topics people want to hear. So, I thought I’d share our “Day in the life” Everett’s edition!
Our everyday is different depending on where Everett is spending his day. Either daycare, dads or papa and grandmas house. But every place he does go to he gets spoiled, loved to pieces and leaves his mark!
When we wake up every morning around 530-6, depending on the day, we start by changing out of nights jammies and also changing and cleaning around his tubie. Everyday twice a day I look at it for any granulation tissue building up, clean around it, apply cream if needed and change his button buddy. The “button buddy” is something that goes around his tubie to help with irritation, drainage and help with tissue build up. Granulation tissue is skin that builds up around the tube, because it’s trying to heal itself from essentially a man made hole that’s not suppose to be there. Also Everett’s outfit is pretty planned out because he needs to wear something that snaps to cover the tubie so it doesn’t get messed with. But boy, is he handsome!
After changing he typical plays in his jump jump or walker till it’s time to leave. During that time I’m getting his daily bottles ready, as well as his tubie and extra supplies needed for that day. In his bag that goes with him he always has the typical supplies as any baby, as well as his emergency tubie kit just in case something would happen. From then on he gets dropped off and either finishes his first 6 ounce bottle with his daily dose meralax by 8:00am. Or if he doesn’t finish it all, the rest goes in the tubie.
The tubie is definitely something that we don’t plan on having forever, so we try to give him every opportunity to experience with different food and textures during his meals. Throughout the day Everett can be offered snacks and loves puffs and baby Cheetos. He loves to just play with just about anything and is very interactive. At 12:00 he then is offered lunch which is some kind of baby food or something easy he can chew on. After that he is offered another 6 ounce bottle. If he doesn’t finish that, again the rest goes in the tubie. Typically after lunch he will then take a nap, which varies from 1-2 hours.
After his nap he plays for a while then is offered another 6 ounce bottle at 4:00pm. Then around 5:30-6:00pm I offer him dinner which is baby food, yogurt, puffs or whatever I prefer to offer him that day. Depending on the night he then gets a bath, and bedtime around 7:00pm. Which involves cartoons and cuddles. Once Everett is asleep this is typically my time to do the dishes, have dinner, clean, and repack his backpack for the next day. Once I do go to bed I typically offer him his last 6 ounce bottle for the day.
Now, this is just a outline of what our days look like overall. There are some days where nothing goes as plan at all, and we have surprise doctor appointments and also therapy. Everett has PT therapy twice a month and OT once a month. They either visit him at daycare or at home in the afternoon. I can honestly say that Everett is striving and jumping through hoops on things that we didn’t know he was going to accomplish so fast!
On Wednesday August 7th Everett received his gtube placement surgery. Of course he did fantastic and passed all his tests. The first two days was defiantly a testament on what the future was going to be like.
The first hick up was just days after, with a fever. With numerous other things going on like teething, a running nose plus just having surgery there were so many thoughts about what was happening and why. Thank goodness it was just fixed with TLC and antibiotics.
Now that a couple weeks have gone by he is rocking this tube and I wouldn’t think twice again about getting it. But man….. what a emotional journey! He is still not eating as much as he should and the tube isn’t bothering him much except for cleaning it. He’s still eating by mouth and super busy experiencing and exploring new things. Which sometimes I think it’s maybe because he’s getting all his nutrition and less stress from mom about eating! All the worry seems just like a memory and the future seems bright! If ever asked again about a feeding tube and any feedback I can give to families I say, do it! It’s a lot easier to do then you think. I would say family is also doing a pretty dang good job too!
I wouldn’t change having Everett worth anything. But I know he is always going to need more care then a typical baby. I still have questions like, how long will he have this gtube? Will he be able to talk? When will he start to crawl, or walk? Will he have the life he deserves? All I know is I can give him a endless about of love, and kissers!
When writing my first blog I mentioned Everett’s surgeries briefly. This time I’m going to go over his Surgery Journey in more detail.
Surgery #1. This happened about two weeks after he was born. The leading up point to this surgery was so stressful. Everything happening at birth and the first week home was stressful. Making sure he was eating enough was the biggest priority. After the first week he started vomiting. The first thought was oh, well some kiddos just spit up more then others that’s just how he’s going to be. Then it started happening more and more he couldn’t even keep a ounce down, and kept loosing weight. Between the initial stress of the diagnosis and this, it was beyond stressful. There were many sleepless night and silent tears at night because there were no words to express. I then tried smaller amounts more often. Still nothing. Then came the emergency room because I couldn’t take it anymore. I couldn’t even leave him to go to the bathroom without him vomiting. They ran tests and everything seemed fine. That was the very first time I had that mom instinct that something just wasn’t right. They just thought he was going to be a baby that spit up. Then the same things kept happening more often. My uncle who is Everett’s pediatrician and I really couldn’t thank him enough for everything he had done. He ran more tests and before we knew it we were in Iowa City getting ready for surgery for pyloric stenosis. Pyloric stenosis is a condition where the opening from your stomach to intestine thickens, which causes food not to go through. Which caused Everett to throw up. They did surgery and pretty much just cut the opening so food would pass through. We stayed the night and when he was able to feed well and not vomit we were able to go home. That was the first night I slept so well in so long, because I was so stressed I couldn’t have a good period of sleep. Come to find out this is also a symptom of Smith-Lemli-Optiz Syndrome.
Surgery #2. This surgery was very much planned and thought through. Everett had a tongue tie and also had some abnormalities with his boy parts. They were able to do these at the same time no questions asked, which was amazing! Everything went smoothly and as planned.
Surgery #3. Defiantly hoping this is the last and final surgery that is needed. Everett has always had a hard time eating enough. Through diet change and trying to add more calories he still wasn’t gaining like he should. There was always a stressful feeling of him eating enough and just trying for that one more bite. He was also getting really good at saying no, puckering his lips together or holding his arm against his mouth because he was done. This was when the time was needed for a feeding tube. This is not a forever thing it’s just to make sure he’s getting enough calories to grow and be healthy for his future. Sitting in the hospital after surgery I still have that feeling of, is this still the right choice. Should have I tried a little bit harder? Did I try enough? Just to have another surgery and go through those risks again. Did we choose the easy way out?
Everett’s Surgery Journey in of itself has been difficult. He never ceases to amaze me with how fast he jumps back and how well he takes it. Every surgery never gets easier from the leading up point and the day of. Everyday is ever changing and something new happens often. The best thing is looking into the bright future and what’s next instead of the past.